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.