Baby Jivenson: Knocking on Heaven's Door

Baby J (Jivenson) passed away on Tuesday night, in the midst of a fierce tropical storm.

I do not know the details, but I can tell you that when I left GLA at 11am that day, Jivenson was peaceful. Now his peace is eternal, and I honestly am so glad, knowing that he is free forever from the storms and the turmoil of this world.

The hospital staff who delivered him sent Jivenson home to die. I feel honoured that although we lost the battle for his life, he made it to our gate, and we were at least able to try. He was warm, safe and comfortable at GLA and, in the end, our loss was his gain.

Please continue to pray for the staff who have cared for this Baby since I left GLA. I saw dread and despair on the faces of my Haitian colleagues when they met Jivenson on Monday. Child deaths are all too common in Haiti and these ladies have seen too many.

I am very mindful today, of the thousands of Haitian babies and children who die long and painful deaths from starvation. I remain hopeful though, that we will be able to 'save' the next one that comes our way.

Have a merry Christmas. I experienced delays at each of the three legs of my journey home due to a of the snow and ice in New York, Amsterdam and Scotland. However, I had strong tail winds blowing in my favour and made up lots of time in the air. As a result, I made each of my connections and arrived home on time.

The temperature in Bridge of Allan dropped well below zero over night. At 8:30m it was still minus 9 degrees centigrade outside. So it looks as though I am in for a white Christmas this year, 'in' being the operative word; at these temperatures I wont be going anywhere! My brother and sister have gone out shopping.I thought they were insane when they announced their plans, but apparently the trip is 'essential'.

An update on Baby J

Baby J, who I wrote about last night is very sick this morning.

He has a severe cleft lip and palate, along with other birth defects. He also has Kwashiorkor - a protein defficiency that causes immune suppression and fluid retention. He had not been fed since he was born, 15 days before arriving at the orphanage.

He has a very bad eye infection and is having problems with his breathing. Young infants tend not to survive Kwashiorkor. Very often, they go into multi-organ failure and die.

If he tolerates the feeds we are giving him, there is a chance he will live. I leave him with God today. In the hands of our loving Father, who knows all things and wants what is best for Baby J.

Thy will be done.

Seeing Jesus

Baby J arrived at GLA at 11 am this morning in a critical condition. He was born 15 days ago at a hospital in Port-au-Prince.

'They said this would sort itself out,' his Mother told me, pointing to the gaping holes where her baby's nostrils should have been.' J's Mum is very young, very petite and softly spoken. In a barely audible voice, she explained that this was her fist child, and that he had only been able to take drops of breast milk since he had been born, two weeks ago. It was immediately obvious to Dixie Bickel and myself, that this little one was not be able to suck.
He has a severe bilateral cleft lip and palate; there are abnormal openings - gaps - between his nostrils, lips and palate. He was born this way- the bones and tissues of his face did not fuse properly when he was developing in the womb, and the results, for him, have been catastrophic. When he got here, his life was slipping away. His oxygen saturation (measured across the skin surface) were just 60%, his heart rate was irregular, and he was very cold.
'What are you thinking?' I asked our director.

Dixie barely paused. 'She [the baby's Mother] has come for help. I think we need to take him,' she replied. We both knew that while his chances of survival were poor, he would certainly die if we turned him away.

And so Baby J is upstairs in our NICU. He is on oxygen and we have put a feeding tube down to hydrate him. He has warmed up now and his heart is beating strong. He is tolerating milk feeds and cries when we disturb him.

J's lungs are clear but he has lots of secretions in his upper airway and his heart sounds are not normal. He has six fingers on his left hand. The fifth and sixth are abnormal and the fifth finger on his right hand is also abnormal. It is highly likely that he has other abnormalities that we can't see. The obvious issues are enough to kill him.

Honestly, I don't know if this little man will live, but one thing is for sure; we will do all that we can for him. Baby J is suffering less tonight than he was this morning. It is our privilege to be able to tend to him, because Jesus said that what ever we do for the least of the least, the poor and the weak, we do to him. Jesus was born for this baby, he is with him and he is in him. I see that and I feel it.

Please pray for the NICU staff and for Dixie as they care for J over the Christmas holidays.

Will They Take Her?

Due to a shortage of funds, GLA is currently only admitting infants who are premature, sick or very malnourished. Although this Baby doesn't fit into any of these categories, we made an exception, and took her in.

She has an older brother whose adoption was completed earlier this year. He has left GLA and is now living overseas with a new family. We are hopeful that his family might consider adopting our new girl. We said 'yes' to her and we pray that they will be willing and able to say 'yes' as well.

We are thankful that she has arrived in good health. She is 10 months old and weighs 14lb, so she is little for her age. She is also a little bit sad to have been separated by her Mum. This is not entirely a bad thing; it means that she was loved, and that she was attached to her mother. Most psychologists believe that infants who bond with a primary care-giver during the first year of life, stand a good chance of bonding with other people, later in life.

Baby A is seeking comfort and reassurance from her key nannies, and I believe that is heart-healthy and good. Since I will be leaving for two weeks over the Christmas holidays, I have been careful not to promote any attachment between this baby and myself. She needs consistency just now, and I am sure that she will benefit from being in the care of Haitian ladies; they have a better chance than I do of holding her, rocking her, and talking to her as her Mother would have. Surely, that is a better balm for her sorrow, than my well-meaning, but foreign ways.

Essential Medications Arrive at GLA

At GLA, we are blessed to receive many medications for our children. Often, these are donated by people overseas, and brought to us by the volunteers and adoptive families who visit the orphanage. These visitors keep us well stocked with many of the medications we use every day. For example, in the year I have worked here, we have never had to purchase a bottle of Infant Tylenol (paracetamol syrup) or a tube of antibiotic ointment. We really appreciate this - a tube of triple antibiotic cream can be bought for $1 (US) in North America; we would pay $10 or more for a similar product in Haiti!

However, donors are not able to keep us supplied with all of the medications that we need for our children. In these cases, Jean Bell, a former Registered Nurse who now works at the GLA USA office, does her best to purchase the drugs we need at a discounted price.

When Dixie Bickel, Director of God's Littlest Angels, returned from Colorado on Friday, she carried with her, many useful medications. The little lady on the left ("Ti Fi") will benefit from a heart medication called Digoxin. Jean was able to source this drug in syrup form. This is very fortunate for Ti Fi, since digoxin is only available in pill form in Haiti and it would be impossible to measure an accurate dose of this drug, to a baby, using adult pills. There is a very fine line between a dose of Digoxin that will successfully treat her heart condition and one that would be toxic, so it was vital that we find some paediatric syrup for our baby.

Now it is in our hands, and we are hopeful that Ti Fi will soon enjoy a better quality of life. At the moment, she is often breathless and she gets tired when she sucks from a bottle. Her heart works so hard, all the time, that she needs to drink high calorie milk formula in order to gain weight.

Ti Fi will need to to take her medication twice a day. She really doesn't like medicine, and so she will purse her lips together and shake her head. It will take coaxing from two of the NICU staff to get her to open her mouth and swallow her medicine. Afterwards,we will cheer and give her a high-five, and she will smile, and she will forgive us, until next time.....

Donate to GLA, so that we can continue to provide medications and other essential supplies to our children.

Angels Watching Over Us

There was a sudden explosion of splintering glass behind me, and even before I turned around, I knew that something catastrophic had happened.

Vivianne, a much loved GLA employee who has lived here since she was a teenager, was on her hands and knees, bleeding heavily. There was broken glass all over the floor, and razor sharp shards still hanging from the sliding door that separates the computer room from the waiting area.

The scene seemed to play out in slow motion. As I advanced towards Vivianne, who was too stunned to to notice the shards above her head, she got up onto her feet. For some reason, she was (mercifully) unable to stand upright. She remained bent over at the waist, as though frozen. I reached her and gently guided out of the doorway. Out of harms way, she was immediately able to stand up straight.

Vivianne was badly hurt. She sustained three deep, jagged lacerations to her face, and another just millimetres the inner corner of her eye. She had several other lesions on her wrist, legs and foot. She had pierced 3 veins, and, one shard had struck a few inches from her carotid artery.

Steeve, the Bickel's 14 year old son, was also injured. Fractions of a second before Vivianne collided with the glass, he has seen what was about to happen. He instinctively reached forward, but of course could not pull her back. his head was sliced by a shard of glass in the doorway. I shuddered hearing that. Had the remaining glass come down on Vivianne and Steeve at that point, it would have sliced them like a guillotine.

It took a surgeon almost 3 hours to close their wounds. Ten stiches for Steeve, and dozens for Vivianne.

It was 3am in the morning before, cleaned up, dressings applied and medications given, Steeve and Vivianne were in their beds. Beyond exhaused, I posted a Staus update on Facebook.'

'Susan Westwood is thankful for the Angels that guarded those we love last night'.

Yes, today we are all thankful beyond the word, that this horrible accident did not end in tragedy. Had one of the shards severed an artery.....Had the remaining shards been dislodged while Vivianne and Steeve were in the doorway....

Please keep them in your thoughts and prayers as they heal. Pray specifically that Vivianne face will not be badly scarred, and that the sutures that were used to close the wound on her foot will hold - they are under a lot of stress because of the width of the wound and its location. Today, she had no sensation in her right foot. We are hoping that as the inflamation subsides, the sensation will return.

A Moment of Insight

One baby stared at the Christmas lights that had been stung up the stairwell in amazement. Then, utterly transfixed, he reached up.

Our Christmas preparations are well underway at GLA, Yesterday, we decorated the main house, where the nurseries for children under the age of two are located.

Baby A is 11 months old and he is celebrating his first Christmas. He is seeing the tinsel, all of these pretty decorations and the lights for the first time. As I watched his astonished expression, I experienced the epiphany; Jesus, light of the world. Conceived by divine love. Pure, holy and self-sacrificing. A tiny baby, born in a stable over 2000 years ago. Such an inauspicious beginning. As I watched the little ones gazing at the twinkling lights, I thought to myself, had it not been for the star of Bethlehem, even the wise men might not have known. And we should all stand in awestruck wonder, just like A.

Vivianne and I were putting the finishing touches to the Christmas tree on the second floor, just as the babies were waking from the afternoon naps. It is a very special tree, decorated not with baubles but with baby bibs, rattles, pacifiers, and bottles! And as our little angels traipsed out to see their tree, I was aware of a strange physical sensation -like a slow moving current moving within me and all around me. A warmth.

I closed my eyes for a few seconds. Opening them again, everything seemed to be just as it had before. Crawling and toddling, wiping sleep from their eyes, our little angels came, and stood, and stared. One baby, who has just turned two and is very sick clapped his hands together and exclaimed 'Bravo!' So delighted and so sincere in his praise!

Yes, the pharmacy cupboards to my left, the cold tiled floor under my feet, babies all around me. Everything was just as it been, but I was different. All of a sudden, everything was so much more precious. There was so much more love in me than there had been a moment ago, for Jesus and for these little ones, and, so much hope for their futures.

What a difference a week makes!

For the first few days after he arrived, our new boy didn't have the energy to do anything but eat and sleep.

The week following admission is a time to stabalize severely malnourished children; we keep them warm and observe them carefully. They are treated for dehydration and any infections that they have, and, we introduce feeds. Children are offered small amounts of milk formula every 2-3 hours. More often than not, they are past the point of feeling hungry. They tend to have poor appetites and they are unable to tolerate anything but small amounts of food or liquid.

Yet from the day he arrived, this boy has defied all of our expectations. A week after he arrived at GLA, he has gained 2.5 lb.

Pulling faces at us!

He has enough energy to play, to crawl around the NICU, pull himself into a standing position, and HE can even walk for short distances, holding the hands of his nurses and nannies.

We would have expected a child of his age to be sad and withdrawn on entering the orphanage: this boy is neither. He smiles and giggles. His eyes are full of hope. And not only is he ready and willing to accept affection, but he reciprocates it.....

We got our first smile from him on Thursday. Friday was the day for our first giggle. On Saturday there was a kiss, a hug, and an invitation to play ball.

As I experienced this miracle, I found myself wondering what our new little man was thinking. If his heart could speak, what would it say?

I believe his heart would say, 'I am whole. For I am loved and I love.'

"We are each of us angels with only one wing, and we can only fly by embracing one another." (Luciano de Crescenzo).

Click here to make a donation to God's Littlest Angels

In Gratitude....

On the 26th of November, we celebrated American Thanksgiving here at GLA. Many of the visitors asked whether we celebrate this holiday in Scotland. Of course, we do not; Thanksgiving pays tribute to the Native Americans who helped the pilgrims survive their first winter in a new and strange land. I do not share in that heritage, yet I have been very much in the spirit of the season this week.

I am thankful, of course, for the abundance of rich and delicious food we enjoyed on Thanksgiving day. Turkey, delicately seasoned and cooked to perfection, fluffy mashed potatoes, green bean caserole, cranberry sauce, and pumkin pie. Yum! And at the end of the day, enough lefteovers to feed everyone all over again on Saturday. And an entire uncarved bird, still sitting in the fridge at the main house today!

Yes, we are trully blessed, and the poignancy of this blessing is all the more apparent, because the abundance comes immediately after the arrival of a new baby. Aged around 18 months old and severely malnourished, he weighed all of 14lb 1oz the day he arrived.

This frail baby is ravenously hungry, devours almost everything we give him, and then looks for more. The wonderful thing about this is that he will, in all likelhood, recover from his malnutrition very quickly. He is gaining weight all ready and the change in him is visible. Less loose skin, and, the hint of a double chin. But oh, how I wish he had never known the agony that starvation brings.

By the time this photograph was taken, just 3

days after he arrived, this tiny boy had all ready

gained 10 ounces.

His mother is 17 years old and pregnant. She has lived on the streets for several years, and is in a difficult place today. She is very sick, she has nothing and no-one in her life but this little boy, and, knowing that she cannot provide for him, she is now faced with a difficult decission; should she leave him here, just long enough to revover from his malnutrition, or must she give him up?

How glad I am that I have always had a home, parents who loved me; a place where I belonged. I never had to wonder where my next meal would come from, or if it would come at all. I had everything I needed, and so I did not have to do degrading things to survive.

This baby is all his mother has. If she decides to keep him, I cannot condemn her. If she gives him up, my heart will ache for her and I will be in awe of her sacrifice.

'This is the child for which I was praying, and Yahweh has granted

me what I asked of him. Now I make him

over to Yahweh for the whole of his life.' (1 Samuel; 26-27).

I don't know that I have Hannah's kind of faith. Please join me in prayer for our new boy, and his mother. Pray that God would touch both their lives, and give thanks that GLA is here, and that tight though our finances are, we were able to say yes when we got a call about a toddler boy who desperately needed us. It is thanks to the generosity of friends and strangers, that GLA can continue it's ministry. I am so grateful for their gifts.

If you feel led to give, click here.

Memories of the power outage

Two weeks ago, we lost power at the main house. The second and third floors were affected, meaning no lights, no refrigerators and no electrical appliances in the nurseries.

By the grace of God, we had no sick babies at that time; no-one needing oxygen or an incubator, no real crisis. Dixie's teenage sons were real troopers. On their own initiative, they strung extension cords upstairs for us.Thanks to their hard work, we were able to light the nurseries for the smallest babies with desk lamps and we had a source of power to drive our nebulizer machine.

I will remember that as the week that the night nannies and I played Florence Nightingale, doing our evening rounds in the big nursery by torchlight. A few of our little ones are scared of the dark but they all giggled and oohed aahed as I made light patterns on the ceiling for them. The memories are fond, and untainted by worry or anxiety.

I will also remember suturing my first knife-wound by the light of a lamp, that week. A neighbourhood boy came for help after he got into a disagreement with his 12 year old sister. His poor Grand-mother sat with her hands covering her face the whole time I was cleaning and anaesthetising and suturing.

A few days later, when he came back for a check-up, I asked him how he and his sister were getting along. His family at home had beaten her, he told me. Did he think she deserved that? Did it make him glad. No! He shook his head back back and forth rapidly, as though trying to shake of the memory. Why not? Because she is his sister, that's why not. It was touching to hear that.

Over the past few months, we have only admitted children whose cases have been critical. It is taking up to 2 years to process adoptions and with donations down and space at a premium, the staff here have a responsibility to guard the well-fare of the little ones that are all ready with us; to ensure that we do not have to compromise on the quality of care they receive.

This gorgeous baby boy (don't be fooled by the peach tones!) came just before the power outage,
at a little over a week old, and weighing 5lb 13oz. His Mother had died shortly after he was born. He was dehydrated, jaundiced and showing signs of weight loss. His family could not afford to buy infant formula and so he had received only water since he was born.

Baby N's case was therefore critical and he was admitted right away. A few days after he arrived he developed a cold and began having diarrhoea and vomiting. The NICU nannies and our head Haitian nurse were very clear about what they wanted to do for this little one.

The previous week, we were blessed to have a nursing mother come to visit her adoptive son, here at the baby house. The lady's birth son had not travelled to Haiti with her and so she was expressing milk, so that she could maintain her supply during her trip. She donated the expressed milk to us, to be frozen and used to help any fragile baby we thought could benefit from it.

The Haitian staff wanted me to thaw some of this milk for Baby N. This is quite remarkable because Haitians are not fans of giving a mother's milk to an infant that is not her own. The ladies here, though, have seen a great many premature infants thrive on breast milk, while others have struggled to tolerate formula. They had seen that Breast milk was easier to digest, and they were very open to hearing about the immune boosters in 'Mummy milk.'

After just two days of being fed breast milk, Baby N was no longer showing signs of illness and he was gaining weight. What a precious gift this Mother has given to this sick, orphaned baby! We really are so grateful to her.

Time is Marching On

The pace of life at GLA does not compare to the frenetic environment of a general Paediatric ward. Yet somehow, three weeks have passed since I last blogged, or journalled.

There have been trying times, but lets not dwell on those. Instead, let's take a look at the moments from which I have drawn my strength; those that have sustained me.

A few short days after I last posted, we were visited by Ti Mirak (our little miracle boy, Jonathon.) Jonathon came to us in May, after his Mother delivered him and his twin brother 8 weeks before her due-date. He was close to death on arrival, and stopped breathing a few days later.

Whenever we discharge a preemie, we tell their Mamas that if the little one becomes unwell during the first year of life, they may bring them back to GLA to be assessed. Jonathon's Mummy was at home in bed with a nasty cold. Jonathon had been feverish for three days and he arrived here with two Aunties and an uncle.

Jonathon was thoroughly examined. He was bright and alert, if a little bit miserable. He was feeding well and didn't have any diarrhoea or vomiting. There were no signs of infection in his chest but his throat and ears were a little bit red.I prescribed paracetamol syrup(Tylenol)and an antibiotic.


At Five and a half months, Jonathon weighs in at over 12 lb. That is quite good for a Haitian baby and it is fantastic for one that was born over 2 months premature! Mme Bernard advised the family that they could start offering Jonathon some weaning foods. His Aunties were horrified.
'No!' one exclaimed!' He isn't 6 months old yet!' We counselled his mother to breast-feed Jonathon exclusively for the first 6 months of his life so that he would have the best chance of survival. Apparently, Jonathon's family are following this advice very carefully! It was encouraging to see Jonathon thriving and so well loved and cared for!

After 11 days, Ti Fi was finally able to breath without supplemental oxygen. She health remains unstable but she continues to make great strides in her development. She is now able to roll from her front to her back and vice-versa. She can shuffle across the floor when she is sitting and she scoots backwards when she is lying on her belly. Last week, I found her underneath her crib!



Two week ago today, I was called to the waiting area to assess a preemie, who had arrived with his Daddy. Lyovens was born around 6 weeks early and we found him to be very tiny for his age (just 3lb 3oz). He is a beautiful boy. He was well wrapped up but cold . He had been born 3 days earlier and hadn't received a single drop of fluid. He had a good, strong cry and I felt hopeful, if in a cautious way that he might live. I'd had a tough week, and Lyovens arrival coincided with a bi-monthy volunteer and staff outing. I wouldn't be able to go, but it didn't matter. Suddenly, I was re-energised. It felt as though God was smiling down on me.

Many of our parents are very afraid of their premature babies, and the things that we do (medically) to sustain them. Lyoven's family however, are very laid back about it all. His Father told me that GLA previously helped Lyoven's older sister, who was also born premature. She is now 6 years old and in school!

Lyovens needed a feeding tube for the first week he was with us. I am pleased to report that he is now breast-feeding. He lost weight initially. We started him on just 5ml of milk, every two hours and gradually increased the volumes. Today, he weighs 3lb 7oz. He still needs to be in an incubator. The biggest risk factor for him is that he is so small for his age. That means he wasn't getting what he needed in the womb and is starting off at a disadvantage.

Yet if there were no difficulty in his life, there would be no scope for a miracle.

A Cup of Water

Monday: We are all up on the third floor balcony. 'We' being (close to)100 babies, 20 nannies, 3 nurses, and a handful of volunteers. Absolute madness! Little bodies darting everywhere. Into everything, pulling, tugging, pushing, bumping and crashing. The Haitian ladies sit in the shaded areas, oblivious to the chaos, seeming unperturbed the cacophony. But then, the atmosphere up here is only a little bit crazier than the big nursery.

1pm: It is after lunch. 'These babies need to sleep,' I declare. My Haitian colleague looks at me disbelievingly. 'These children will not sleep.'

An hour later, I am sitting amongst a sea of sleeping tots. I have single handedly managed to settle all but three of the toddling babies. Everyone is glad. Looking around, I sigh. Each tiny girl and boy has their unique quirks. Some have been rocked to sleep, others have had their backs rubbed or their bottoms patted. Some have fought nap-time. Others were out within seconds. One little man is holding his ear. Another has his hand inside his nappy. Oh Oh!

Seriously though; they are all so different and special. I have been hot, tired and irritable, but watching all these little chests rise and fall I am suddenly overcome with feelings of warmth and tenderness.

Tuesday is weigh-in day. The numbers aren't good. Overnight, we have been hit by an epidemic of diarrhoea. and vomiting. A few children are looking quite dehydrated. All are in need of pedialyte (oral rehydration solution). Some cannot keep down even sips of fluid. They need injections of anti-emetics to help with the vomiting. Amazingly no-one needs IV fluids.

Wednesday: We are still in the throws of the epidemic. We have also had an outbreak of hepatitis among the grown-up's at the orphanage. Some of the newer children have tested positive and many others have been having mysterious fevers, and symptoms of possible hepatitis infection. All of them need to have blood drawn drawn. It is a major operation. Lollipops are placed in mouths. With a few notable exceptions, there is very little crying or flailing.

Thursday: Ti Fi went back to the NICU at the end of last week. Many of the babies have colds but she has developed a high fever and we cannot get it down. She had a chest x-ray a few days ago. it showed a pneumonia. Ti Fi was started on an antibiotic last night, but she has deteriorated overnight. She needs oxygen. She is fractious and looks at me pleadingly. I pick her up. She burns in my arms. She is panting and I can feel her heart hammering under my palm. The monitor reports a heart rate of 210 per minute. I get 208!

Ti Fi is so fragile and we are concerned that her little body will tire. Our paediatrician does not think that she can keep up this level of effort for long. She is seriously ill but although I desperately wish I could take away the hacking cough and the raging fever, and although I am anxious for my Ti Fi, I have an inexplicable peace that she can overcome this.

Late morning: I am asked to go to see a premature baby. His Aunts have brought him here. I learn that he was born in Delma (close to Port-au-Prince) earlier today. It is immediately obvious that it is too late. He is is waxen and very still, but oh so, beautiful. The sorrow I feel is strangely sharp.

I have been thinking lately, that I am in danger of shutting down emotionally. Now, a still, small voice whispers in my subconcsious that I am not to harden my heart. I cannot fullfill his commission if I do that.

Friday: I am in my room, and I hear Ti Fi's oxygen machine bleeping. Stepping outside, looking up at the NICU, I see that the first floor of the Main House is in darkness. The generator has failed. There is no power to light the house or drive the oxygen concentrator.

I rush up to the NICU to find Ti Fi struggling to breathe. By the light of a cellphone, I see that she is blue. The Pulse oximeter tells us that her transcutaneous oxygen saturation is 73%. That is life threatening!

The power comes and goes. I hastily gather together a bag of emergency supplies. It has been decided that Ti Fi and I will spend the night at the toddler house (about a mile up the mountain). They are not set up to deal with very sick children, but at least they have a more reliable power source than we do.

3am: after a rough night, Ti Fi and I finally catch some sleep. The IV has become dislodged and is out and my little lady remains feverish. She has a spasmodic cough and is constantly reaching for me.

I have missed her so much since I returned her to the NICU last week. I am glad to have this chance to love her through her sickness.

I wake just after sunrise, and am rewarded by a tiny smile from Ti Fi. Sometimes, I think, it is the little things that make the greatest difference in the lives of my babies. To be touched, to be held....

Shortly after lunchtime, we are heading back to the main house. Everyone at Kay B (the toddler house) has been so gracious but I am overwhelmed by relief to be headed back to the main orphanage building, and to have some medical back-up again.

The rest of the weekend: don't ask because I don't know. I got all of two hours sleep on Friday night, and was unable to nap when I got back to my own bed the next day.

One thing I do remember: being slightly thirsty, and desperately tired, and not having water in my room or the energy to go and get some. I had been complaining to my room-mate, the night before, telling her how much I missed Scottish water. I absent-mindedly reached out my hand. I don't why, and I found a cup of water where there had been none. It was cold, clear and pure; just like the water at home. I know my God is near me!

Like Springtime

Ti Fi,

Ill-equipped though your grand-father was to raise a baby, he did not visit the magistrate for a full two months after your Manman died. Surely, his steps were leaden on the way to the court that day. There must have been some level of struggle in his mind, between the desire to hold fast to you, his tiny grand-daughter, and the need to give you up for your own sake. If there had not been such a struggle, why would he have waited?

You arrived at our home, sick and emaciated, parched in body, and with eyes that betrayed a heart, equally parched by grief. A beautiful flower, scorched and uprooted. That was you, Ti Fi. And so I planted you in the garden of my own heart.

There was no relief in her countenance. There were gentle hands to tend to her, there was treatment for her dehydration and there were medications for the fever and infections that wracked her little body. Still, she refused to feed, and was in a state of decline. She needed love, I knew, and an abundance of it. Dixie was in the States with Vivianne, a key member of the Haitian staff. I was tired from the additional duties I had taken on, and yet, a still small voice urged me to open my arms and draw Ti Fi close. And that is how she ended up in my room.

Sure enough, within a matter of days of moving in with me, Ti Fi smiled. They say that the best prognostic indicator (of survival) in a severely malnourished child is a smile. Here it was; hope born in both our hearts.

As the days and weeks passed, I saw a rejuvenation in Ti Fi's spirit that spoke of the miracle of God's creation; the capacity of a child's heart to heal. New growth as in springtime. She began looking at the NICU nannies and nurses with wonder and she became very interested in toys and in her surroundings. Soon, she she found a voice. 'Ah haa haa' (the cutest giggle), Hi nah (a greeting), 'aaah' (to express her delight) and 'hey' (this one is to get our attention.)

Did I mention that she sings too?

She found the strength to sit unsupported, when, a few days before she couldn't even hold her head up. Within the month she was not only weight bearing on her legs but she was "climbing" from my lap to the top of my head, beaming and triumphant.

Yet love alone has not been enough to restore this precious girl's broken body. She has had an NG tube for 6 weeks now, much longer that I am comfortable with. It seems that Ti FI has health challenges, the extent of which we do not fully understand at this point. She becomes breathless when she sucks her bottle or eats from a spoon. Her heart races and she sweats. She is only able to tolerate formula that is comprised of partially broken down proteins, and she must be feed small regular volumes if she is to hold her feeds down.

Her weight gain is slow, even now that the diarrhoea and vomiting are under control. If early indications are anything to go by, it may take three times longer to recover this baby from her malnutrition than I would have hoped.

More time, more work, more patience than I thought I had. More laundry and more frustration than I thought I could deal with. And looking at this precious girl, who has suffered so much sickness, loss and pain, and who is so absolutely brimming with joy, how can I possibly say that I am overburdened? What reason have I to complain?

'I am he. I am he who will sustain you. I have made you and I will carry you...' (Isaiah 64:4).

Ti Fi weighed 8lb and 40z on admission. Today she has gained 3lb. She is becoming chubby, and she is a beautiful, delightful baby who absolutely has my heart.

Ti Fi with 'M' (left). He is my boy, she is my girl and M has whole heartedly accepted Ti Fi as his baby. They are so cute together. He is very protective and will not allow the other children to touch her. He points out a great many things of note to her. Ti Fi, much to M's delight is smiley and responsive.

She seems to have turned a corner this weekend; I haven't used the NG tube at all. She needs continuing prayer for healing. So Lord, heal this precious baby of ours according to your perfect will, and give her for every sickness, every sorrow and every pain she has suffered, a double portion of joy.

Amen

An Update On My "Problem Children"

Sandia Laura's family were unhappy that we would not be able to care for her here. Before we could organise a car to take them to a hospital, her 16 year old Mother left with the baby. We heard that they kept Sandia at home for a day. Somehow, she ended up in General Hospital in Port Au Prince. We do not know what her diagnosis was or what kind of care she received. What we do know is this; a few days ago, Sandia Laura passed away. It is difficult to understand why such a tiny baby should suffer so much in the few days she lived on this earth. We are comforted by the hope that she exchanges all this pain for an eternity in Heaven.

***

Baby Mike became very sick a few days into his stay with us. His abdomen was distended, his colour changed to a deep red, and he began bleeding from his mouth and nose and under his nails. By the time he became ill, we had received devastating news from his Aunt.

Baby Mike's Mother had been carrying twins. Her Labour had progressed so rapidly, that, caught unawares, she had delivered Mike into the bucket she used as her toilet. She was unable to deliver the second twin. She went to a hospital, where she had a caesarian. It was too late for Mike's twin, who died in utero. Mike's Mum died the following day.

We contacted a Neonatal Nurse Practitioner in the USA. She felt that Mike was suffering from an overwhelming infection, possibly listeriosis, which his Mother would have contracted from eating contaminated food.

We learned that with treatment, there was a 20-40% chance that Mike would die. To our great distress, we were unable to site an IV line to give this baby the fluids and antibiotics he needed. It was late at night and there was nothing for it but to provide unconventional care. I gave antibiotics by injection. I then placed a tiny needle under his skin and connected it to a bag of IV fluids. IV fluids were slowly infused overnight. It was not ideal but fluid was gradually absorbed into his system.

The next morning, Mike was alive and crying loudly. We were so impressed by our courageous boy, and as you might understand, desperate to do everything that we could to save his life. Our Paediatrician arrived and managed to start an IV. Things were looking up. The Doctors were optimistic that he might live, and Mike definitely had fighting spirit.

Unknown to us, there was trouble brewing. At home, Mike's Grand-Father was demanding that the women of the family go to GLA and insist that we return his Grand-son to them. We explained that Mike was critically ill, and that he would die without oxygen,. IV antibiotics and fluid. We explained that he was too small and weak to survive out of the incubator, but that in a few short weeks, things might be very different. There was no talking with them. No reasoning.

When they returned the next day with Baby Mike's Father, GLA's hands were tied. We re-iterated to them that Mike would die, but they were insistent that they wanted him home. The Haitian nurses were obliged to remove the IV, take off the oxygen prongs, wrap the baby warmly and hand him over to his family, all the while knowing that death was inevitable for him now.

One of the staff tells me that Mike's parents are not from this area. Their home town is a Voodoo stronghold. Haitians are deeply spiritual people and it is likely that the family believe that an evil spirit caused the death of the Mother and Mike's twin, and that this spirit was still attached to Mike. This being this case, they would have no faith in the power of Western medicine to change a thing.

Mike's Aunt lives a few hundred yards from our gate. Minutes after the family left, as I sat on the NICU balcony cursing his family and grieving for Mike and for them and their country, with its spiritual shadow lands fir its people bound by beliefs that hurt and harm, the steady beat of traditional drums began sounding...

***

Baby D's blood work indicated that she was suffering from a severe bacterial infection. We never did find the source. As the days passed, her colour improved and her heart rate slowed. We kept her on a strong antibiotic for two weeks, so that we could be as sure as we can be that the bacteria that made her sick has been eradicated from where ever it was growing. Baby D is back to her usual happy, smiling self. We will continue to watch her closely.

***

And Ti Fi.... We have had a hard few weeks, but she has turned a corner.Hers is a story for another day.

Problem Children

Last week I was too busy with "Ti Fi" to be updating any blog. Ti Fi was delivered into our arms a week and a half ago. She is around 8 months old and has been in the care of her Grand-Father for the past 2 months. She weighed 8lb 4oz when she arrived.

She was all loose skin and jutting bones. Last Saturday, she began bruising spontaneously and was refusing to drink. She had been having a lot of diarrhoea and was dehydrated.

Malnourished children can bruise due to vitamin K deficiency, lack of clotting factors in their blood or because of severe infections. I examined her thoroughly but did not find any sign of infection. We started her on an antibiotic anyway, just as a precaution. We also started vitamin K supplementation. Thankfully, there has been no new bruising this week.

To be absolutely sure that Ti Fi receives the level of love and attention she needs to set her on the road to recovery, she has moved in with me. She has made good progress; she has gained over a pound, is smiling a lot and has found the strength to sit unsupported for short periods. Needless to say, I am smitten and you will be hearing much more about her!
So that is problem child number one, although I wouldn't call her a problem exactly. Problem child number two arrived yesterday, just as I was looking forward to a quiet weekend. She was born a month prematurely and is from the area in which the orphanage is located. Her Mum brought her to us because the baby was vomiting. She was born on Wednesday and it transpires that she has never passed a bowel motion. It looks as though she has some sort of obstruction in her gut. I placed a feeding tube down her nose and aspirated 70 cc of bile from her stomach. 70 cc far exceeds a new born's stomach capacity.

Sandia Laura is on IV fluids and antibiotics. We are aspirating her stomach contents every two hours to make sure that she doesn't aspirate them into her lungs. We will transfer her to a hospital in the city for surgical evaluation first thing tomorrow morning. Please pray for Sandia. She is stable but seriously ill.

Mike is problem child number 3. He is also from our area and he is an extremely low birth-weight boy, weighing 2lb 4oz and born approximately 10 weeks before he was supposed to make his debut appearance in this world. Mike was born early this morning and he arrived at GLA just after 9am. He was having some difficulties with his breathing at first. and he was very, very cold and had a low heart rate. When I left the NICU, he was warm, pink and crying. I want this baby to live so badly it hurts. God, mature his lungs and give him the strength to live through the next few weeks.

Problem child number 4 is a year old. D had a cellulitis (soft tissue infection) in her leg a few weeks ago. Today, she developed a slight fever and became very, very pale. She was breathing 8o times per minute and had a heart rate of over 200/minute. She is very unsettled and seems to be in pain, but a top-to-toe examination has failed to find a convincing source for the infection. I did a blood draw on her this afternoon and started her on an antibiotic and regular pain medicines. We will have to watch her very closely. We nurses do not like not knowing the cause of a fever in a child.

I laughed when the night nurse came in. She smiled nervously.I smiled back. 'You wont rest tonight,' I told her. 'I didn't rest all day! 'We went on to discuss the babies we (affectionately) refer to as our problem children. Hopefully, they will all be 'good', or, in other words, remain stable over night. This nurse desperately needs some beauty sleep and she wont be getting any if any of her little darlings misbehave.

The telephone in the main house rang, and rang and rang last night. It was 9pm and the office was closed, but the ringing was so insistent (read irritating) that I went to answer the call.

The Mother of one of my NICU babies wanted to visit. I told her that the house was closed to visitors over the weekend. She kept asking, 'If God willed,' could she come in the morning? I wanted to say yes, but told her instead that no-one worked in the office on Saturdays. She could come on Monday, though, 'God willing', to see her baby.

She paused for a moment. 'Is he sleeping', she asked? My heart ached for her then. Her tiny son is happy in our arms but her own saddness will not be quick to fade. She will always wonder what he is doing.

We admitted four new babies this week. Miss Magaly decided that we were going to do blood draws on them that very day. I met each of their Manmans. It is rare for me to have any contact with them at the point that they hand their babies over to us. Frankly, I would rather not be present for that. There was no great show of emotion from any one of the ladies, just a quiet resignation. Circumstance compels them to relinquish their babies.

Two of the babies were very malnourished. This tiny boy (below) is two months old and weighs 7.5lb. His face is swollen with fluid and his skin is depigmented and peeling: he has Kwashiorkor malnutrition. Young infants (statistically) do not have a good chance of surviving Kwashiorkor, but this one is smiling and feeding well. We couldn't ask for more hopeful signs than those. Still, we will manage Baby P conservatively. His immune system will be very compromised and so we are watching him closely for signs of infection. If we treat him too aggressively, and try to fatten him up too quickly at this stage, he could go into multi-organ falilure.

This baby's emaciated body tells an all too common story of starvation. At 12 months, he is old enough to pine for his Mother. Please pray for him. If he adjusts well to the orphanage, I am sure that he will thrive here. He is in good hands. Loving and experienced nannies, who know that he has lost everything, will do many little things to ease his transition. They will will hold him and rock him the way Haitian Mothers do. They will feed him foods that are likely to be familar this week, even supposing they are not the best foods to recover him from his malnutrition. Allready, this frail little boy is reaching for these ladies and allowing them to feed him strange new foods. I am in awe of them.

And we are seeing double, yet again. A gorgeous set of twin boys have joined us in the NICU. They are just 5 weeks old and are happiest when we place them so close that each can feel the warmth of the other. This is brotherly love!

Blessed Be The Name Of The Lord

My mind has been drifting up the mountain to Kenscoff all weekend.

Our premature baby died on Friday morning, too small and too weak. We called her Papa to the NICU and he was present when her heart stopped for the second time. We could not start it again, and the decision was out of our hands. As Dixie removed the tubes and expressed her regret, the Papa put his head in his hands and wept. There are few things more devastating that a Father's cries.

.What will be in that Manman's mind, I wonder, when she undoes the sheet, to reveal the body of her tiny infant. Will she groan? Wail? Tear at her clothes? Fall to the ground? Will she rock her and sing? Refuse to believe? Or, will she hold everything back? I can only guess. I can't really know, but, my mind is drifting off to Kenscoff, to a 26 year old lady, who loved this tiny girl so much, that sick and weak though she was after a difficult pregnancy, she sent breast milk to the orphanage every day, because I told her it was the best thing for the baby and that it might help. Now, Manman's breasts will be full of milk. They will be heavy and they will ache. And perhaps Manman will be left with the insubstantial weight of the baby we called Gabriella in her arms, even after the infant has left them. Grief is like that.

These past three months have been tough in the NICU. Not a single week has gone by without a crisis. First Jonathon, then Baby S. A baby with septicaemia; so sick that we almost most her. A 6 month old who developed bloody diarrhoea and stopped breathing. An HIV positive boy with recurrent pneumonia. Now Gabriella. I try to be positive but in all honesty, I am feeling the strain. We are on an emotional roller-coaster here. Most of our babies do not have mothers. We are not just nurses and nannies to these little ones and by the same token, they are so much more than patients or charges to us. We carry an incredible weight of responsibility in our hearts, and it is really hard sometimes.

"Dee Dee", ready to catch a flight to the States with Dixie, early this morning. She was extremely ill last month with septicaemia but is now well enough to travel for surgery to correct her club feet.

Gabriella died at 8:30 in the morning. Within the hour, another infant arrived in a critical condition. She came from another orphanage in our area. This 11 month old baby was relinquished by her birth family two months ago. She has been refusing to eat for sometime. She developed watery diarrhoea and was so dehydrated when she got here that she was going into shock. We started her on an IV and antibiotics, but she is still refusing to eat. Perhaps she is missing her Mum. Perhaps she is not feeling well, but this baby must eat in order for her gut to heal. If she is not eating by tomorrow, I will have to site a feeding tube. Please remember her in your prayers. We do not know her name and so we are calling her "Fifi" for now. When she is better, she will return to the orphanage she came from.

I am so glad that Fifi made it here and that she arrived when she did. She is being lavished with love and attention. She is not the only one who will be healed.

Then Job arose... and he fell to the ground and worshiped. And he said:

“ Naked I came from my mother’s womb,

And naked shall I return there.

The LORD gave, and the LORD has taken away;

Blessed be the name of the LORD.” (Job 1:20-22).

What a week!

What a week....

It began with the very great honour of preparing Baby S for her marathon trip to Indianapolis. She was escorted out of Haiti by a former volunteer, Anna, who spent a month at GLA, getting to grips with the skills she would need to transport this high-care baby from the orphanage to her host family in Indiana.

We estimated that it would be a 16 hour trip, door-to-door, but of course, Anna and Baby S were sent on their way with enough feeds, medicines and supplies to accommodate potential delays and all kinds of other eventualities. What if Baby S dropped her temperature? I sent a thermometer, a make-shift cap and a hot water bottle. What if she vomited all her feeds? She would need oral rehydration solution. We packed some. What if she choked and couldn't clear her airway? All we had to offer was a bulb aspirator. What if she had a prolonged seizure? We hoped she wouldn't.

When the time came to wave off our precious girl, I knew I probably would never see her again. There was indescribable relief, joy, and celebration, but also a twinge of grief and anxiety. How Baby S would cope with 3 flights, and the changing altitudes was a great unknown. Regardless, we waved her off with smiles and optimism. After all, Baby S needed hope.

Less than a week later, Baby S has come through her surgery and is showing some promising signs. We are still praying for a miracle of healing and we believe that God will continue to show himself in her life.

Later that day, we re-admitted a recent NICU graduate. This 7 month old boy had bloody diarrhoea and a high fever. He was vomiting and dehydrated. We started an IV and antibiotics. Twenty-four hours later he was shaking violently with fever. By Friday morning, he was in a lot of pain. He began having seizures and he stopped breathing. It took almost two hours of resuscitation to get him breathing again. Amazingly, by the end of the morning, he had stabilized. All of our babies are special, but the ones who cheat death become more precious than any words could tell.

Sunday brought yet more drama. On the way home from church, I took a call on Dixie's Cell-phone. A Tiny baby had arrived at the gate. We were grateful for the heads-up. When we arrived home, we found a 2lb 1 oz girl in the NICU. That is just 900 grammes!

She had been born at 7am that morning. Mum is in her mid-twenties and had been hemorrhaging for the past 8 days. She delivered her baby by herself, at home. As Mum left the orphanage early in the afternoon, one of the nannies, who was observing Manman from the pefect vantage point of the NICU balcony, commented that she looked weak, as though she would faint. Sure enough, as I walked outside, this poor lady's legs gave way from underneath her.

The orphanage Director started an IV on her on the ground outside the baby house, because that is where she fell. She was ably assisted by myself and two of the ladies who work in the kitchen. This is Haiti!

Meanwhile, our newest charge, who was profoundly hypothermic, had been bundled into an incubator and started on oxygen. It was clear from looking at her that she was extremely premature.

Baby Gabriella's skin is very pink, slightly shiny and almpost transluscent. The cartilage in her ears is so soft that her ears fold easily, and do not recoil very well. Based on these, and other signs of her physical maturity, we estimate that this tiny baby has a gestational age of 27 weeks. That makes her almost 3 months premature.

Today, Gabriella is in a stable condition, but we are all very aware that this could change on a moment. The next 10 days will be critical. God, preserve her immature organs and protect her from infection. We are all rooting for her.

Someone Watching Over Them

This week, God has been very much present in the NICU at GLA.

One baby who developed a high fever last month and became extremely ill with septicaemia and seizures has been recovering slowly. The feeding tube is out but this little one remains weak. She developed a respiratory virus a few days ago. We nurses had all been so incredibly relieved to see signs that she was getting better and it was worrying to see this fragile baby get sick again, at a point when her resistance to infection was still so low.

Thankfully, our precious girl is improving. Her breathing is slower and less laboured and she is no longer coughing and wheezing as much as she has been. Tonight, one of the Haitian staff praised God out loud for this baby's life. The little lady in question has limb deformities that will require surgical correction. In the few months she has been with us, she has made tremendous progress in her motor development, As soon as she is strong enough, she will be going to the USA for the treatment she needs and deserves. Yes, it is certainly down to him that she has overcome so much.

Last week, we received the crushing news that although we had a surgeon who was prepared to perform Baby S's surgery free of charge, his hospital would not provide the care. Had God spoken? We knew that we could not continue to aspirate cerebral spinal fluid from this baby's head indefinitely. We were at a point where we had to decide either to continue searching for a Doctor and a hospital who would agree to treat our baby, or give up and begin providing palliative care. There was one key question in my own mind: what areas of Baby S's brain were active, and could anyone give us an indication of what her future capabilities might be?

Before that question was answered, a third surgeon, practicing in Indiana, heard about Sabrina and he accepted her case, on the spot, without reservation! This absolutely brings us to our knees!

I can not over-emphasise the urgency of getting this baby out of Haiti. Despite aspirating cerebro-spinal fluid every other day, her head is growing by a centimeter a week. There is a huge amount of pressure inside her head. She is unable to feed, she is vomiting and having seizures. She is also having frequent episodes of hypothermia. Please pray that the hospital administrators will be blessed with merciful hearts, and that they will expedite all the necessary paper work so that GLA can proceed with the US visa process. Time really is of the essence.

So many doors have opened for this little one. Surely, someone is watching over her


Baby S: The Angel sleeps. Isn't she pretty!

God's Special Children

These are busy days at GLA. In the past week and a half, we have admitted 6 children to the main house. All of them have special medical needs:

On Tuesday, we welcomed a malnourished, HIV positive baby. He came to us from another orphanage that did not have the medical expertise to provide appropriate care for him. This smiley little man is around 5 months old and he weighs 9lb 6oz. He had a high fever, diarrhoea, vomiting and thrush when he came to us. He didn't know how to suck from a bottle and his arms and legs were very stiff. We treated him with antibiotics and fed him by NG tube. Today, he is doing much better. His NG tube is out and he is learning to feed all by himself. He is receiving a special hypo-allergenic milk formula and gentle physiotherapy. It is such a blessing to see this baby recover and begin to thrive in the few short days he has been with us. We are so thankful that God directed him here.

Last Friday, we received a set of twin boys. We now have 4 sets of twins at the baby house. Our newest set are 12 months old and they came to us from Jeremy. They were fed mostly on watery maize meal porridge and are in the beginning stages of kwashiorkor: meaning that the lack of protein and nutrients in their diets has stunted their growth and caused their faces to swell with fluid. Both boys had fevers when they arrived. We started them on antibiotics, high calorie milk and fortified peanut butter. Their blood tests show that they are very anaemic. These little men are full of parasites, which, have been sucking life-giving nutrients from their tiny bodies. Less than a week after they were admitted, the boys are all ready gaining weight.

A few months ago, I shared with you that when twins are born, Haitian mother's often favour one twin over the other. Sometimes, this happens because the families are impoverished and just can't support two extra mouths to feed. Voodooists believe that the birth of twins heralds a curse on the family, that the dominant twin will take the life force from the weaker sibling and that with the eventual death of the weaker twin, the curse is broken. Here at GLA our nannies are excited by the arrival of twins, but they believe that the first born twin will always be stronger, healthier and more intelligent. I beg to differ. Both boys are gentle and sweet natured, but although Gwo Marasa (the big twin) is more advanced in his development, it is TI Marasa (the little twin) who protects and nurtures his brother. The boys spent two hours in NICU on their first day. While they were their, I assessed them and developed a treatment plan. Ti Marasa was very watchful. He stoked his big brother's head from time to time and gently shoved any other child who tried to touch him. It was too cute and (so I told the nannies) evidence that both boys have patrticular strengths.

Wednesday of this week brought 3 new arrivals from a rural area near the Dominican border. Two of the children are siblings; a 15 month old girl and a two year old boy. Both children are very malnourished and have problems with their eyes and their vision. We admitted them to our step-down nursery, where they are getting lots of love and encouragement from some very dedicated nannies. The little girl was reluctant to eat over the first few days. She has a cough, a fever and a nasty bacterial infection in her nappy area. Her brother is tiny, swollen with fluid and timid. His malnutrition has caused some dermatitis and he has a cough and diarrhoea. He is eating well and we hope that he will continue to recover. malnourished children are immuno-compromised and our goal is always to build them up as quickly as possible.

The same day, we admitted a 3 year old girl. She was abandoned by her mother as a baby and was living with her grand-father. She has severe burns on her stomach and her right leg. She tells us that she fell into the fire while she was helping her Grand-father with the cooking. A missionary family found her lying under a tree. She was so severely burned that the tendon on her leg was exposed. Her wounds were contaminated with dirt and faeces and infested with maggots. It is difficult to understand how a malnourished child survived with such severe thermal injuries in such unsanitary conditions. Local people begged the missionary family to take this child. If they hadn't she would certainly have died. She lived with them for a few weeks. They did a wonderful job cleaning and dressing the wound, which is almost healed, except for a 5cm by 1cm area on her leg.

We are cleaning and dressing this daily. Mme Bernard, who supervises the nursery staff insists on keeping this little lady in the Intensive Care area until he burn is completely healed. That way, we can minimise the risk of the wound getting infected. It is such a joy having A little girl with us; she is bright, beautiful and talks in complete sentences, in an adorable country-side accent. It is a novelty for us to have such an intenractive at this house and I am sure she will be a little bit spoiled, (and maybe a lot spoiled) here!

My newest baby came yesterday. He is 4lb 10oz, and slightly premature. He is beautiful and healthy and sucks good volumes of formula from a bottle every three hours. He is not showing any signs of infection. Oh that it would stay that way, that he would grow and get strong on loving care and good nutrition alone! Sweet and simple.

Optimism and hope, Realism and Doubt

I try to be optimistic, because optimism breeds hope. Hope in turn strengthens faith, and with faith anything is possible. At the same time though, I have to be realistic...

Take Baby S: our instincts tell us that there is more to her than her CT scans suggest. When her eyes seem to meet ours, or when she grasps our fingers in her tiny fist, or when she nestles close to us, and we feel the steady rise and fall of her breath, there is a growing sense of attachment; sweet and simple.

Yet Baby S's situation is neither sweet nor simple. Every Dr who reviews the CT images agrees that she is ancephallic, meaning that she has substantially less brain tissue than she ought to have. We are told that a diagnosis of ancephally usually come with an inability to see hear or feel. While our little lady certainly seems to be deaf, she pays attention to human faces, she cries and flails when she is in pain, and she is soothed by gentle touch.

Yet for every positive sign that her brain is active, there is a worrying sign: there are episodes of hypothermia, she has seizures, and a few weeks ago she stopped sucking. When she started to suck again she stopped swallowing and began wretching, choking and vomiting whenever we fed her orally. Last week, the results of an EEG seemed to be the final factor in determining whether surgery really would make a difference to Baby S's quality of life or whether it would even increase her chances of survival.

The result: she was asleep when her brain activity was measured. When she was asleep, she produced normal "sleep waves."

We have been aspirating cerebro-spinal fluid every other day. Baby S finds this painful and lately, she has become upset when we prepare her for the aspiration. The head Haitian nurse was clear in her her assessment of the wails that Baby S let out when we swabbed her head with an antiseptic solution: Baby S knew what was coming, and that was a sign of intelligence. Pain response is a fairly primitive reflex, but memory and anticipation are something else.

There is no certainty about Baby S's prognosis or about her potential. At this point, many minds are burdened with the knowledge that the decisions they make today, will affect Baby S's tomorrow. Please pray that God will imbue all those who consider Baby S's case, with the knowledge and the wisdom they need to make the decision that is in her best interests. Please also pray that optimism will thrive, and realism will not lead to unfounded doubt, or to despair.

A Sick Baby

One of our smallest babies in the NICU spiked a fever last weekend. By Monday he was showing signs of pain and respiratory distress. His lungs sounded good but he needed oxygen. We were not sure what was making him sick so we started him on a broad-spectrum antibiotic and gave regular medications to control the pain and fever. Since he didn't want to feed, we put an IV line in and gave him fluids through it.

Over the days that followed, this angel stared up at us from his crib with wide eyes. I need to tell you something and you have to act on it, those eyes seemed to say. We all wished that we could understand.

On Thursday night he became very sick with a high fever and a very fast heart rate. It became apparent that he has a bad case of gastroenteritis that had caused some ulceration in his gut. We gave emergency treatment and called a paediatrician for advice. All the while those huge eyes were boring into us. You are grown-ups. Make it go away!

If only, we grown-up's had that kind of power. We are thankful to be able to give our angel the most appropriate antibiotics for his condition and that we have the anti-acid medications he needs to heal his gut. We can give oxygen, IV's and painkillers to support him but it is going to take time for him to get better. Of course, at just 3 months old, he doesn't understand that.

Our angel is stable and comfortable, but I will feel more confident about his recovery when I see a smile. I think we all will. While we anxiously wait for and try to coax that smile, we pray.

The Highs and the Lows...

We were at a very nice hospital down town: clean, modern, well-organised and with friendly staff who inspired confidence.

The nurse was having trouble citing an IV on Baby S. She needed one so that they could inject contrast fluid for detailed CT imaging.

Baby S was was flailing and crying as the nurse inserted the needle.
'She is strong!' the nurse remarked in Kreyol.
A Doctor shook his head. 'I just don't understand it - How can a baby with so little brain tissue behave so normally?'
'The radiologist was almost reproachful. 'Do not question the works of God. Do not question his works.'

A short time before, Baby S had been waving her arms and kicking her legs as we prepared her for her scan. The previous day, I had needed help to put a Naso-Gastric feeding tube down because a certain feisty newborn girl kept batting my hand away.

'How much brain tissue do you think she has?'
'About 20%, someone estimated.'
'Well then, maybe she has a good 20%?' I offered.

Everyone who meets Baby S agrees that she is no vegetable, but it is difficult to get specialists in a far-away country to understand that. Ancephalic babies usually do not see, hear or sense pain (so we are told). When Baby S flails and cries, then, when sucking on her hand, or being stroked or held or rocked comforts her, what is that?

Earlier in the week, the surgeon who committed to treat Baby S reviewed previous CT images, and rescinded his offer to provide care for her. Disappointed though we were, we continued to pray that God's will would be done, and we continued to believe that if God wanted Baby S to live, she would live.

As the days passed, though, Baby S's head continued to grow. She was having more and more seizures. She stopped feeding and developed diarrhoea. Hope ebbed and flowed. While people in the USA continued to advocate for our little ladie, her health was becoming ever more precarious.

She needed to have some of that fluid drained from her head, but we couldn't get a Haitian Neuro-surgeon to perform the procedure. On Monday 'we' contemplated doing it ourselves, under the guidance of an expert from North America. Maybe we could set up a video link we joked.

By Thursday, Baby S had a head circumference of 57cm (it had been 54.5cm less than 2 weeks before) and there we were, performing the procedure in a Haitian orphanage in the mountains; a procedure that would usually take place in a high-tech operating theater.

The aspiration was successful. An hour later, Dixie Bickel received a message: a well respected neuro-surgeon in Indianapolis has reviewed the CT scan images, and had accepted Baby S for surgery. Provided his hospital will provide the supportive, he will operate as soon as we can get Baby S to Indianapolis!

We have her on antibiotics to prevent her from developing an infection before she gets her surgery. She is also on regular pain relievers. We want to keep her comfortable. Please pray for her while she waits for treatment and please pray for us all as we continue through the highs and lows of loving and caring for Baby S.