In Septemeber 2008, I traveled 6000 miles to Haiti's Kenscoff mountains. My mission: to care for some of the orphaned and abandoned, the sick, malnourished and premature infants of this beautiful but beleagured Caribbean nation.

Sunday, 29 January 2012

Letting Go

Wideline's father has dark, glowing skin and smiling eyes. Even in his deep grief, those eyes smiled on me, inviting me to talk with him, share with him. He was softly spoken and would not try to compete with the din of the generator close by. To hear him, I had to incline myself towards him. The exchange that followed was heartrendingly honest in its simplicity.

'The mother of my children, my first born children is seriously ill. She is so swollen her stomach is this big,' he told me, indicating on his own frame, the extent to which his partner's stomach had swollen. The lady has post-partum cardiomyopathy. It is a serious and life-threatening condition, and American missionaries that run the isolated clinic in Cazale are treating her.

'First my son died, and now my daughter. The lord gave them to me, and then he took them away, and I have to say, 'Thank you Lord,' but I have to know what happened to them.'

For a few moments, his open question hung in the air. As truthfully but as gently as possible, Mme bernard and I went on to explain: The babies were premature, growth retarded in utero, and very, very fragile. Their father nodded. Yes, he knew that. We didn't know why his son died, because we never met him, but by the time Wideline came to us, she was dehydrated and malnourished and her temperature was low, and her body was on the brink of shutting down.

She responded to treatment, and we hoped that she would do well. We did what we thought was right. Looking back, we think she had an intestinal infection that did not respond to the antibiotics. Her body began to swell and she began to bleed under the skin (we think because of malnutrition and infection.) We did everything we knew to do, including changing the antibiotics, giving blood to correct her anaemia, lots of medicines to get her kidneys working........ She stopped breathing and we resuscitated her, but she was not responding to treatment. Her skin was peeling off all over, her body becoming ever more swollen. When she stopped breathing the second time,  we saw that treatment wasn't having an effect, and the baby was suffering, so we let her go.

As we talked, Wideline's Father continued to nod. He was unceasingly gracious. Someone came in with a photograph. I cringed inwardly. The photographs that they gave him were taken after the baby had died, when she was a bloated, bruised, bloody mess. There was nothing gentle about this!

The man's response surprised me. A light of understanding dawned on his face. 'Oh, yes. Oh, yes, I see. Thank you, ladies!'

It was a very sincere thank you, but for what?

I can see now, that she was suffering. Thank you for all the care you gave her. Thank you for letting her Go.

And that was a kind of closure for both of us. For the bereft father, and for the nurse who made tough decisions, in the absence of the baby's parents. We had acted according to what her father wished for her. The Father who had made the three and a half hour journey from Cazale to Thomassin and back three times in a week. No small feat for an impoverished Haitian family.
Life while she gripped on to it. And then a release. That is what he wanted for his precious daughter.

'I believe she is in heaven.'
'I do too.'

And this was no empty platitude - the bible teaches that the dead in Christ will rise first, and I handed Wideline over to God when she was critically ill.

We look forward to the glorious reunion, that is promised, knowing that Wideline precedes us in the assent heavenwards.

We still struggle with the injustice of her suffering, even as we accept that the secret things belong to God (Deuteronomy 29:29).

One day we will understand. One day.

Thursday, 26 January 2012

Little Did I Know.......

Last night, my heart was aching for the baby girl I had lost. I was reflecting. Knowing that the signs of protein-energy malnutrition were so subtle in this infant that no-one, picked up on them, no-one, I still wished I'd listened to my gut. I remembered thinking Wideline's cheeks were full, the day I'd met her. They didn't look puffy, and as the days passed, she seemed to fill out. Looking back, I think her little body was slowly, very slowly filling up with fluid. We all thought she looked better. She seemed to be doing better too. There were subtle signs in her blood work, though  that might have alerted me to the fact that Wideline had an intestinal infection  she wasn't recovering from. This is hindsight, of course, because I didn't know the signs, or what they pointed to, but that doesn't hold back the wave of regret.

Regret is only productive, if it is felt by someone with a capacity to learn, and I am a learner. I think that is why my heart longed for another baby - not one to fill the hole Wideline had left. No, I was waiting for another baby, who might benefit from the things I wish I had known last week. Little did I know, that baby was already with me...........

Malozie is a month and a half old. She arrived yesterday amidst the chaos that surrounded Wideline's final hours. I only had a chance to glance at her.

The NICU was quiet. this morning. My attention was on our new baby. 'She's a little bit pale,' I commented. 'Scrawny too.'
'Her Mother has mental health problems, Susan. And her father is deaf. She didn't get very good care. She has been spoon fed porridge.....She is awful demanding,' Mme Bernard, told me, raising her eyes just slightly. 'I don't think she has been mothered. I think that's what she needs, to be mothered.' As she said this, the head Haitian nurse took the baby's tiny hand in hers. It was a gesture of loving affection. I was able to appreciate it only for a moment.

'No!' I exclaimed.
Mme Bernard registered the problem, the instant I did.'She's a little puffy.'
'No! I can't to this again!' I knew the chances of a 6 week old baby beating protein-energy malnutrition were slim. Too slim.
Mme, Bernard nodded patiently. 'Susan, you don't have a choice.'

Malozie's hands and arms look pudgy in this shot, but notice her legs are shiny,  as result of a fluid build-up under her  skin. She is not a chubby healthy baby. She is suffering from Protein-energy malnutrition. This is a life-threatening condition and a nutritional emergency.
There are a few things I wish I had known to do for Wideline. Now I am doing them for Malozie. She is getting the right medications and the right vitamins and minerals. The right tests and investigations are being performed. The right observations are being made.

On the grand scale of things, her chances of survival are extremely poor. Based on our recent experience though,  there is reason to be hopeful. Maozi is the 4th very young infant (3 months old and younger) that we have admitted to GLA in the past year with protein-energy malnutrition. Two of the babies before her survived. One died. It is my prayer, that I will be able to count sweet Malozie among the babies that lived.

This tiny girl is very uncomfortable today from the  pressure of the fluid that has built up under her skin. I have spent lots of time holding her and rocking her. This is the only thing that soothes Malozie. I was glad to be able to cradle her in my arms. As glad as I am to have her under my gaze and under my wing.

 Malozie is my reason to press on.

Wednesday, 25 January 2012

So Many Questions

I have so many questions. There aren't answers for any of them.

This morning, Wideline's blood pressure dropped. She went on to bleed internally. Blood poured from her mouth and nose, and she stopped breathing. I had been up until past mid-night, doing everything I thought might help. So much of  what I had done was painful for Wideline, but she still had a lot of fight in her body, and I felt I needed to respect that.

Now I believed enough was enough. I told the NICU staff I didn't believe that we could save this baby, and that I didn't want to prolong her suffering. They were not ready to let her go, so we resuscitated Wideline.

The morning passed in a bewildering flurry of activity. I remember pushing fluids and all kinds of drugs. I remember that I squeezed Wideline's heel, trying to get a blood sample for some tests I wanted to run. I remember wincing as Widelines skin slipped away under my grasp, leaving yet another fiery lesion, seeping straw coloured fluid. I remember sitting outside on the balcony, where Mme Bernard drew blood from me. I remember that we gave it to Wideline.I remember she looked better after she received that blood. The swelling in her face went down. I remember  dressing her wounds with Lisa, a Canadian nurse-volunteer. I remember starting CPAP, then leaving briefly to do some research. 

 By the end of it, Wideline was stabilising, but still, her kidneys were not working.

Oh, I have so many gruesome memories of this afternoon. Some things are best  not shared. And I have so many questions. Why was our best effort not enough? Why not? Why do I have to write yet again, and tell the people who have been praying, that in the end, all I could do was hold her? I watched a tiny baby put up an astonishing fight. Why God, could you not have taken Wideline gently, weeks ago? What was this all for? 

And there are no answers. There is exhaustion, and there is grief. For some reason I can't explain, there is also a waring spirit; the will to press on, and a sense of urgent expectation.

I am waiting for my next baby.

Tuesday, 24 January 2012

Wideline: Seriously Ill

Last night, Wideline's face and feet began to swell. In the early  hours of the morning, her temperature dropped, and her body began to shut down.

Later in the morning,  I wiped her face clean. Suddenly, her face was bloody. I examined her top to toe. The creases of her neck, behind her ears, her underarms, were raw and moist. It looked as though the baby had sustained second degree burns.  I was horrified. Utterly horrified.

Our paediatrician diagnosed dermatitis of Kwashiorkor. Kwashiorkor is a particular kind of malnutrition, caused mainly by protein deficiency. It is usually fatal in babies under 6 months of age.

In the past 6 months, two very young infants have been nursed through Kwashiorkor at GLA, but nether of them were as sick as Wideline is now. She has just received her 5th mini transfusion of blood and two further doses of sodium bicarbonate to reduce the acid levels in her body.

I have done all I can. The rest is in the hands of my God. Of Wideine's God, and yours. Ours is a God who answers prayer.........

Sunday, 22 January 2012

God Speaks

On Thursday morning, I went on a cleaning spree. As I worked at a slightly feverish pace, wiping down and organising NICU supplies, I felt the eyes of the NICU staff on me. The behaviour they were observing looked an awful lot like 'nesting.'

'You do know Susan, that now you've done all of this, God will send you a baby?'
'Of course I do,' I replied, in an even, matter-of-fact-tone 'He will send a baby very soon, just one, though. Not twins this time, and I need to be ready.'

The next morning, our director came upstairs with news. A 3 lb baby had arrived at a clinic in Cazale. I nodded. The baby had a twin brother who had already died. Yes, oh my, so that was why I would not be receiving twins. The surviving infant was not doing well  Did I want to go and collect her?

'Yes', I did.
 A nurse shook her head and smiled. 'I've been told God doesn't speak to people.'
'He does.' After all, the day before, he had whispered to me about a baby, and now, I was going to find my baby.

Wideline was born 5 weeks ago, approximately 6 weeks early, to a mother with a previously undiagnosed heart condition. Unable to produce breast milk, the young mother had fed Wideline and her brother watered down porridges, along with other family foods. The babies lost weight and became sick. When Wideline arrived in Cazale, she had  watery diarrhoea and was severely dehydrated and anaemic. A visiting paediatrician gave some fluid through a needle that she placed in the baby's bone, and then managed to start an IV in her scalp.

Wideline's Mother, bloated, sick and exhausted had been counselled that further pregnancies would probably kill her. Wideline was alert, but her temperature was low, and that was a worrying sign. The mother was not well enough to stay at GLA, but her father asked to be allowed to ride in the back of our truck. He had to see where we were taking his daughter. She was his only child.
'Of course'.

I placed Wideline on my chest, under my scrub-top. She warmed up, began crying and sucking on her fists. She drank an ounce of formula milk. Although she settled after that, her breathing became very laboured during the last 30 minutes of the ride up the mountain to GLA.

Bedside tests at the orphanage showed that the baby had very high acid levels in her blood. This, together with her anaemia were life-threatening. The baby was showing early signs of heart failure.

As the first of three drug infusions was in progress, there was some good news: although the blood bank in Port-au-Prince was closed, Wideline had the same blood type that I did, and my blood had recently been screened for infections.

She received a mini transfusion within the hour. It got her through the night.

Using an IV pump  that we received just a few weeks ago, we were able able to give Wideline two further transfusions of my blood the next day. It was wonderful to see the baby, who was at that point so  pale that our Haitian staff said she was white, not Haitian, take on a lovely rosy glow.  She was started on very small feeds, just two millilitres every three hours, but her gut was so fragile that she was not able to tolerate even these tiny volumes of formula milk.

Wideline receiving her second transfusion of Blood in GLA's NICU
At this point, Wideline benefited from another donation, this time a donation of  breast milk that was given to us a year ago, by the mother of a three month old baby, named Fannie. Oh, how thankful we are! Wideline, as sick as she was, was able to digest the milk that Fannie's mother gave to us. We also gave Wideline some pre-digested fats intravenously while we gradually increased the volumes of her feeds.

Nutrition is absolutely critical to stabilising the tiniest victims of malnutrition. I stood by Wideline's incubator for hours, watching her breathing, observing her movements, and charting trends in her heart rate, temperature and blood sugar levels. I wanted to know how much urine she produced. How often her bowels moved........

Although her anaemia was severe, her malnutrition could not be classified as severe, since her weight was almost normal for her length. This poor baby though, had been undernourished both inside and then outside the womb, at a time when her tiny organs were underdeveloped. Now her body was embattled. I hoped Wideline had arrived in time. A very experienced nurse once told me that all the training that a well resourced NICU in the developed world might provide, could never prepare a medical professional to care for a baby like Wideline. It was true. Babies like Wideline did not exist in North America or in Europe. I had tried, several times, to tap into whatever expertise existed, in the care of very young babies, with life-threatening malnutrition. It seemed that if such expertise existed, no-on was sharing it.

Wideline did stabalize. Today she is hungry, That means that she is moving out of the stabilisation phase and into the recovery phase of her treatment.

Please pray for continued improvements in Wideline's health, and pray with confidence, knowing that God already has an interest in her survival. If he didn't, he wouldn't have spoken to me about her.

Sunday, 15 January 2012

A Father's Prayer

The witness, an Australian nurse, recently arrived in Haiti, was utterly overcome as she watched the young father, as strong as he was tender, cradling his only son, a tiny but growing infant in his large, powerful hands.
Photo Courtesy of Katie MacGregor
The Father's behaviour was like that of parents the world over. He undid the sleeper, counted ten fingers and ten toes, then  unfastened the diaper, and apparently finding everything in order, nodded his head. With tears streaming down his face, he kissed Charilson over and over, Caressed his soft curls, and smiled.

'I prayed everyday for my son. Everyday', he said, wiping the tears from his face.

The listeners where in little doubt that this was a holy moment. A father, who loved his son so much, that he would hand him over to us. A father who, heeded my caution, that the infant boy was incredibly frail,  and prayed without ceasing, for 6 weeks.

 In those 6 weeks, Charilson has been gravely ill, he has come back to us from the threshold of death and he has almost doubled his weight. The word miraculous is all too often used, and too lightly, yet excellent nursing care, good nutrition, and human love alone cannot explain Charilson's triumph over death.

Could it be that the constant prayers and the intercession of his earthly Daddy, and others who love this boy, paved the way for the divine to do an impossible work?

The miraculous may be a nebulous concept and one that is difficult to pin down, but a few things are not: I know that Charilson's Daddy is a wonderful father, and that he anxiously anticipates the day, when his son will be strong and healthy enough to return to a center closer to home. I know that I have learned something about love from this man, about simple uncomplicated faith, and I know that there is something about unceasing prayer - about it's ability to get impossible things done. 

Photo Courtesy of Katie MacGregor