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 did. Tonight, one of the Haitian staff praised God out loud for this baby's life. This little one 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 emphasise the urgency of getting this baby out of Haiti enough. 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 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 nurse was clear in her her assessment of the wails that Baby S let out when we swabbed her head with an antiseptic solution: She 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 decission 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.

He Came Through Again

We got the results of 'Baby S's' CT scan on Friday night. They were disappointing. We were advised that it was highly unlikely that any neuro-surgeon in the developed world would agree to operate on an infant with Baby S's diagnosis, which was hydro-ancephaly, meaning that she is hydrocephalic but that under all that fluid, there isn't much brain tissue. Discouragement entered my heart....for a moment.

Discouragement though, was quickly upstaged by hope. So many people have been praying for this sweet girl; that God would enter into her life and take authority, that his will would be done and any obstacles in her path would be swept aside. I didn't doubt that if God wanted Baby S to have surgery, it would happen, however bleak things looked.

This morning, all the nurses on site, Haitian, Scottish and American agreed that that Baby S did not behave like an infant with ancephaly. She seems quite alert. She likes to be held and rocked, and she likes to be touched and sang to.

Early in the afternoon, Dixie received a call from the USA. A neuro-surgeon in California had accepted Baby S, a host family had been identified and two ladies were ready and waiting for the call to come to Haiti and escort her to the states.

If you have been praying for our little lady, please don't stop now. Her head circumference went up today, so I am acutely aware that we desperately need the US and Haitian authorities to expedite the paperwork that will be needed to get Sabrina to California.

We are so grateful for the people in the USA who have worked hard to secure care for this vulnerable baby. We are grateful to the God who works through them and through us. And we are encouraged by so many 'small things'. Baby is feeding better than she did at first and her seizures are under control. I thought she might be having a seizure today when I saw her smacking her lips. Then, she brought her hand up to her mouth and began sucking it and fussing. baby S was hungry and she was letting us know about it. Such a normal behaviour, such a relief to witness it.

Over the past 3 weeks I have had no less than 12 migraine headaches. On Tuesday I finally decided to pray about it. That very day, the cycle broke. I am so glad; it is not easy to function with blinding pain, nausea and dizziness - try functioning and being pleasant when you are feeling that way. I'm sorry to say, I didn't always manage.

There are constant reminders that God is still here, and still answering our prayers. Every morning, I ask him to give me everything I need to minister to these babies. He is doing just that. A few days ago when I was checking one of my fragile toddlers, I noticed he had a slight heart murmur. I asked a visiting Doctor to check it out. She confirmed that the child had a murmur but said it was very faint. Although the murmur might have been missed, I am very grateful that God gave me ears to hear it. In this little boys case, the most likely cause of his heart murmur is severe anaemia. His immune system is compromised by HIV infection andanaemia might have made him more susceptible to infection than he all ready is.

In the NICU, our miracle baby continues to grow and thrive. Jonathon is up to 4lb 5oz now. He is out of his incubator and off of his caffeine; apnoeas and bradycardia's are a thing off the past for this beautiful boy. Hallelujah!

Our little man had his first bath on Monday. His Mum was sure he would protest. We submerged his body in warm water, let him touch the end of the bath tub with his feet and moved him gently back and forth. To Mum's surprise, Jonathon was very content. We told her that all the time he was growing inside her, he had floated in warm fluid. He felt secure now because he was experiencing sensations that were comforting and familiar. It is such a blessing to experience precious moments like this; to be able to teach his Mummy about her preemie son's inner world, and about the things she can do to make him feel safe and loved, when, a few short weeks ago, we didn't think he would live.

Mum spends 8-9 hours a day in the nursery, caring for her baby. Jonathon is probably around 36 weeks old (measured from the time he was conceived) and so we are working on establishing breast-feeding. There really is no practical alternative to breast-feeding for this Mum and this baby once they go home. Jonathon is doing very well sucking at the breast and although his Mum is anxious about her milk supply, we can reassure her with absolute certainty that she is making plenty of milk. She is able to express 6oz at a time and Jonathon sucks around 2oz at each feed!

'Baby S' is in a stable condition, but she is still in need of urgent medical attention. Her head circumference has increased by a centimeter since we admitted her a week ago and the increased pressure in her brain caused several seizures on Monday and Tuesday, as well as an irregular heart rate. 'Baby S' is on anti-convulsant medications now. She isn't feeding well, but she is taking enough milk to stay hydrated.

It looks very likely that a surgeon in the States will agree to treat our angel. Our Haitian Paediatrician has offered to write letters in support of expediting the processes of obtaining a passport and visa for Baby S. God make this child's path straight and remove any obstacles that stand between her and your will for her life.