Mesi Saint Margarets!

When a missionary worker is moved on from their position, it is important that they train others to take over their duties. Often, the tasks that they undertake are very specific and the missionary worker is  the only person in the organisation who truly knows their job. At the point I left Haiti, I had not had the opportunity to go through this handover process and I was concerned, as many of you were, by the impact that this would have on infants receiving care at nurseries in the Kenscoff mountains. A financial donation from Saint Margaret's Roman Catholic Church in Stirling, though, made some closure possible.

The stewardship of people's financial gifts is a serious responsibility. Following some careful thought, prayer and wise advice, I came to the conclusion that when spending the available funds, I should strike a balance  between meeting the immediate needs of Haitian babies and investing in their long term care.

During International Breastfeeding Week, I undertook some continuing professional development that helped forge a a plan to allocate my church's money in the most impactful way: I was reminded that there is a two week window period, following the birth of a baby, in which breastmilk supply is established. If the infant is born too small or too weak to suckle at the breast, the supply must be stimulated in other ways. The best way of achieving this is through a combination of mechanical expression with a hospital grade breast pump, followed by hand expression. Research demonstrates that regardless of the size or gestational age of a newborn, the long-term success of breast feeding depends on achieving an optimal level of production by the 14th day of the baby's life. Mechanical pumping and hand expression induce the milk let-down reflex and empty the breasts completely. This effectively  stimulates the supply and can result in  the production of 750-1000ml of breast milk by the end of the critical  14 day period.

Additionally, hospital grade breast pumps are the only pumps that can safely be used by multiple mothers and they are the most durable pumps on the market. Armed with the facts, I made my decision - a second hand hospital grade pump and some spare milk collecting systems were purchased for the orphanage I worked at. With the help of the Vanderewell family, the system was hand delivered to the orphanage by a volunteer. A visiting nurse has since confirmed that the pump is already in use and the the mother who is currently using it is producing volumes of breastmilk that greatly exceed her own baby's requirements. She and many other mothers,  will now be able to produce as much milk as their babies need, for as long as they need it. This will have a significant impact on the survival rates of babies, after they leave the nursery, since premature babies in Haiti are discharged into environments in which formula milk is not a safe or viable alternative to breastfeeding.

The breast pump would be difficult to top, in terms of meeting babies immediate needs and investing in their future health and development. The idea that followed, though, also met these criteria. I learnt about a new CPAP cannula. Neonatal colleagues in the USA had introduced it into their units. They told me that the cannula made CPAP easier to manage.  I did some research and learnt that the RAM cannula looked liked an ordinary oxygen cannula and could be applied without pinning and strapping it to a hat or fixing it to the baby's face with harsh adhesive tapes. As a result, skin breakdown and nasal septum damage (common risks with existing systems) were virtually eliminated. Was it as safe and effective as the prongs I had previously been using, though, and would it work with the equipment I'd had in Haiti? Yes, I was told. Additionally, the new cannula was preferred by many parents and nurses because the babies looked more normal without bulky CPAP tubing in front of their faces and because it was easier to place babies on their parents chest for Kangaroo care, when the RAM cannula was used, instead of a traditional CPAP prongs.

I wrote to a company, requesting product samples. I was sure that the availability of these cannulas would increase the likelihood that the CPAP programme I started in Haiti would continue without me. I was recently given several boxes of the cannulas, entirely free of charge, by the company that manufactures them. As a result, I have decided to share the cannulas among NGO's that provide nasal CPAP to sick and prematurely born babies in Haiti. Real Hope for Haiti and the Haiti Hospital Appeal are among the charities that will benefit. They are thankful that the generosity of a Scottish church and a California-based medical supply company  have paid forward to them.

The RAM cannula is a nasal interface, designed for use with CPAP and other non-invasive ventilation systems.  It is sized specifically for young and prematurely born infants and can be used without the tapes that can damage  newborns' fragile skin. Photograph courtesy of NEOTECH.

Since the Ram cannula's were donated,  funds that had been allocated to meet the health and childcare needs of Haitian babies still had to be spent, in full.  It did not take long to find a good use for they money that had been raised: an individual donor had given me a cheque, which she asked me to spend at my discretion. One afternoon, I read a facebook post, written by missionary friends who worked at Real Hope for Haiti in Cazale. Two children had attended their rural clinic in desperate need of specialised surgery and an appeal had been launched to ensure that these children received the care that they so desperately needed. Both children were successfully treated. A seed sown faithfully by a donor from my own church helped to make this possible, covering 10% of the the children's initial medical fees. Below are remarkable photographs of one of the children, before and after her treatment. 

Renia arrived in at Real Hope For Haiti with a severe neck swelling that was beginning to obstruct her breathing.

Renia after treatment

With the  remaining funds, a liquid iron supplement was purchased. Iron deficiency anaemia is a significant problem among Haitian children and one that can have an impact both on their health and long-term mental

development. Oral therapy is expensive and in all the time I was in Haiti, it was never possible to provide

the long courses of treatment that are recommended by European Paediatricians. I was able to source a

liquid supplement in bulk: a solution that will extend the benefits of this treatment to many children.

I am sure that the members of Saint Margaret's Roman Catholic Church did not expect their donations to stretch quite as far as they did, multiplying and spreading across Haiti!

A Pita - Until Later

Over the past few weeks, I have done lots of thinking, and lots of praying, and lots of talking with the people close to me. Still, I can't seem to find the words for what I have to tell you.

Friends, I left Haiti at the beginning of July. With great sadness, I have to tell you it has been decided that I will not be returning to God's Littlest Angles, not because I don't want to return, but because it has become impossible for me to do so. I know that this news will come as a surprise to a lot of people.

So many of you have such a stake in what I do in Haiti. Some of you have prayed for me and my sickest 'angels', some of you have given money and raised funds to provide supplies and equipment for the Neonatal  Unit, others provided specialist medical advice and therapies for the babies, and, when I was very ill earlier this year, some of you quietly donated to cover my medical expenses. Those expenses were covered in full. I am thankful, beyond words, for each one of you, however you have come alongside me.

Many of you tell me that you are so grateful for my blogs and for the stories and insights I have shared about my work in Haiti. Many of you recognise that I built something at the orphanage, specifically at their neonatal unit in the Kenscoff mountains - I built on the capabilities of the unit to provide excellent care to prematurely born and severely malnourished infants, that is true. The bigger truth though is that without all of you, and without God, none of it would have been possible.

There are two main concerns that the people seem to have when they hear my news: I would like to reassure you all that although I have had very significant health problems this year, I have had excellent medical care in Haiti and in Scotland and I have no serious, ongoing medical issues.

The second area of concern people have is whether I will continue my medical ministry elsewhere in Haiti.
Believe me, I am grieving the loss of  many many things. I have lost Haiti, my work there, and my relationships there. I would never have chosen to leave so abruptly, and I want nothing more than to be back in Haiti. My nursing expertise, though, is very specific, restricted to the care of infants and children, and, in Haiti, particularly to the care of very young, severely malnourished, sick and preterm babies in a very resource poor, but relatively privileged environment. Yes, I did a good job, but I did it with clinical haematology analysers and monitoring equipment. In another setting, I might well be lost. So you see, as much as you appreciate what I did near the mountain village of Fermathe, there wont be any non-governmental agencies beating my door down and bombarding me with offers of paid work.

I hope that one day, I will be in a position to return to overseas medical missions in a full time capacity.
Maybe, short term opportunities will open up for me. For example if anyone wanted to introduce a low technology bubble CPAP to their neonatal or Paediatric unit, clinic, hospital, orphanage or medical centre in Haiti or elsewhere, I could certainly provide advice and ongoing support with that.

For now, I ask for your prayers as I continue to heal and adjust to some massive changes. Pray for me as I try to find a way forward that will strengthen my nursing capabilities. I fully believe that all babies and children, whether they are in Haiti, or in Scotland or anywhere in between deserve the very best nursing care. Excellence is what I have always aimed for. I will continue to actively pursue excellence, I promise you that.

A pita (until later) and with love and gratitude

Susan

Losing it - Shamira's Bravery

Shamira, arrived at the baby house withdrawn, and distrustful. Just two years old, she had already learnt to protect her little-girl heart from the sting of rejection. She was brittle-haired and balding, with dry, cracked skin pulled taught over an angular frame. No-one had ever told her she was pretty. She knew in her mind she wasn't a lovely child. Her family had left her with strangers at an impoverished orphanage, further up the mountain road. The staff there didn't even consider her worth feeding every time there was food. That was how Shamira saw it. It wasn't true but she believed the lie.

Five days after arriving at God's Littlest Angels, were she and 22 other children had been transferred by concerned Social workers, she was finally receiving some of the things she needed and deserved. She was sleeping in a new bed, on crisp white sheets. Her caregivers smiled at her often, held her and fed her until her stomach was full. Her ear infection was healing. There were toys and visitors. On that fifth day, a bowl of food, that she sad she didn't want was taken away. Somewhere deep inside, Shamira believed she was going to lose everything. She began screaming and kicking, clawing and biting.

It was an ugly display, but we were seeing the fury of a toddler whose cries hadn't been heeded for a long time and I wanted her to know that we cared about her hurts and that we loved her. She was in such a state, though, that she couldn't remember why she was upset and she wouldn't allow anyone to comfort her. You won't do this to me, traitor! You wont taunt me with good things and take them away! Let me go!

Shamira needed to be held. She needed to let a grown up help her through this, but any attempts to re-assure her only increased the volume and intensity of the screaming and fighting. I lay her on her stomach, sat at the head of her cot, and told her it was OK to cry and to be angry. Shamira quickly settled. After a few minutes, she pushed up on her arms and looked up at me with a tear-stained face.

'All done?'
yes, she nodded
'But you cried hard.' Shamira was utterly exhausted and slightly sheepish, but she wasn't going to be scolded this time,
'Your throat must be sore. I bet you are thirsty.'
Yes
'You want a drink of water?'
'Oui.'

That was not Shamira's first meltdown, but it was the most intense, because now she lets grown-ups hold her when she is angry. We are allowed to soothe her. Shamira is beginning to do something else, she wasn't prepared to to when she first arrived. She is accepting affection, and smiling shyly every time Chantal, her key nanny tells her she is a little doll. Who, me? she seems to ask.  That takes courage. I think the many people instinctively respond to hurt the way Shamira did - we shut down, we get defencive. Yet Jesus said on the mount, 'he who seeks to save his life will lose it.' I wonder if one implication of what he was saying was that, sometimes, our response to our trauma is more damaging than what was done to us in the first place.

Photo courtesy of God's Littlest Angels

Now, Shamira's bravery has opened a door to healing. She  is delighted to be told that she is a doll. She always wanted someone to tell her that. She always needed to know someone thought she was pretty, and  for someone to be enthralled by her.

Mercy - An Update On Fedo

For several hours on Sunday, I was afraid that Fedo would not survive. On Monday, his abdomen remained tense, and he was not well enough to be fed. On IV fluids, and without a protein source, the tissue swelling returned. Yesterday, it was worse than ever. I was alarmed and discouraged, knowing that diarrhoea increases the body's protein requirements, and knowing that there was no way that Fedo was going to be able to receive protein for at least a few days.  His limbs were stiff and he cried out in pain whenever we handled him. His left eye was so swollen that he was unable to open it.

The very worst thing was that twice each day, he experienced life-threatening drops in his blood pressure. As the hours passed, we learnt to anticipate these episodes, treating them with boluses of IV fluid. Friends of God's Littlest Angels orphanage, who operate a a rural clinic and malnutrition centre  at the other side of Port-au-Prince, were advising us about his care. I have gained a lot of experience with very young, severely malnourished babies but the Staff at Real Hope For Haiti specialise in the treatment of Kwashiorkor (the type of malnutrition that Fedo has). They explained that children with Kwashiorkor often go into severe shock due to fluid shifts in their bodies.We were all very grateful to them for their wisdom and guidance.

 I continued to pray for healing, but my heart's loudest cry was for mercy for this child. I have seen two deaths from Kwashiorkor in my time at God's Littlest Angels and I couldn't stand the thought that Fedo would suffer, more than he already had.

Overnight, Fedo turned a corner. His cries were different this morning - they were hunger cries. He isn't able to suck yet, but he is taking formula from a syringe and he is digesting it well.

Fedo is not out of danger yet, but he has come a long way. Please continue to keep him in your prayers.

The Call Got Through

‎'Oh, Miss Susan! I was trying to get you on your cell phone but the call wouldn't go through!' Nurse Cami told urgently, before I had even reached the top of the stairs. Her eyes were wide with alarm. Fedo didn't look well to nurse Cami, said. She thought he'd had a seizure, She was sure there were more to come. 
'Don't worry about the cell phone, Cami, the call got through, I reassured her....


Two minutes earlier, I was in my room, when a voice in my head told me to go and check Fedo's electrolytes. It was close to 10pm, I was tired, and I wondered if it could wait till tomorrow. 'You'll regret leaving it till tomorrow,' the voice cautioned. 


As I got supplies ready to check his electrolytes, the baby began to have a seizure. I was able to respond instantly,  because apparently, someone up above has me on speed-dial and although I am inclined to reject calls from unknown numbers, I answered this one ;-)


Fedo's condition is slowly improving but the seizures are a new development. Please remember him in your prayers, as he stabilises and his body struggles to adapt to electrolyte shifts and blood loss, following yesterday's severe intestinal bleed. 

Fedo - A Father's Day Prayer

He is said to be six months old, but this embattled angel behaves like a much older infant.

He arrived on Tuesday of last week, swollen from from protein-energy malnutrition, with a cough, fever, diarrhoea and a severe case of thrush in his mouth. He wouldn't drink -not milk, not juice or oral re-hydration solution. not from a bottle, a cup or a syringe. I remember arguing half-heatedly with the head Haitian nurse. She knew, that I knew, the baby needed an NG tube, she told me. I did know that, but I still didn't want to put the tube down.

Re-signed, and with the tube in my hand, I explained to Fedo in a gentle voice, what I was going to do, and why. He put his hand up in front of mine. The gesture and the facial expression that accompanied it communicated his feelings on the matter very clearly. Stop right there Madam! I am not ok with this! The NICU staff were as surprised as I was. Maybe Fedo was considerably older than six months. Maybe he has just experienced too much in his 6 short months in this world. Maybe he knows too much.

Fedo came during an exceptionally busy week, during which, at one point, the orphanage's Intensive Care room was full to bursting with 15 babies, many of them sick, and a three year old in heart failure. Fedo received a continous feed, electrolytes, medications and vitamines through his NG tube. By Thursday, his swelling was going down and his infections were clearing up. On Friday, he began sucking from a bottle and smiling. I was thrilled to see this fragile baby healing so quickly. Kwashiorkor malnutrition causes swelling of the tissues, wasting and severe immune-deficiency due to low protein levels in the blood, together with other nutritional deficiencies. Fedo though, was on the path to recovery.

Despite these hopeful signs, Fedo experienced a life-threatening complication related to his malnutrition today. Our orphanage Director checked in on the NICU babies after lunch and found Fedo extremely ill. While she was starting an IV on him, he went into shock and developed severe breathing problems.

It seems as though the tissue wasting that has resulted from extreme malnourishment has affected Fedo's intestines. He developed a high fever and suffered a  gastro-intestinal bleed this afternoon. When I arrived in the NICU, he was unconscious, unresponsive, extremely pale and in such severe shock that we could not detect a pulse.

For over an hour, we worked hard to stabilise him with IV fluids, oxygen and antibiotics. Dixie, the orphanage Director, performed as ice-water lavage to slow the bleeding. As we worked, we prayed, all the while against the terrible fear that Fedo might die in front of us. We advocated hard for this orphaned child, for a healing, preferably in this world,, according to your perfect will, Lord

At the time of writing this post, Fedo is in a serious but stable condition. He re-gained consciousness this evening and turned to my voice. His gaze was searching, pained and confused. What is happening to me? Please explain it Miss Susan. In all my life, nothing as terrible as this has ever happened!

We ask that you echo our prayers for Fedo tonight. Our God is the Father of the fatherless. He is Fedo's Daddy and the great physician and I have great confidence in his infinite love and concern for his stricken infant son. Imagine his anguish as he watched his helpless baby suffer. I am thankful to his birth Father, for seeking help and I am hopeful that for Fedo, help has not come too late. Although I recognise that Fedo couldn't be in better hands than in his heavenly father's. I am so, so sorry that his earthly father doesn't have his son in his arms. Today is Fathers Day. No Father should be forced to make the impossibly difficult decission, to give up their children in order to save them.

Rebecca - Not 'Forgotten'

It seems that something about my shock startled Rebecca's mother out of her cold indifference. Minutes after I announced that Rebecca didn't need her mothers milk, not if her feelings about the baby were so intensely negative, not if our continuing to press for milk was increasing her sense of hostility, the teenage mother sighed and began expressing. She continued to provide milk over the days that followed.

Rebecca, who was born significantly premature and malnourished. Rebecca, who was struggling with a severe viral infection. Rebecca, who had difficulty digesting her feeds. Rebecca, who was so highly stressed that she was producing excess stomach acid and vomiting streaks of fresh blood. Rebecca, who had been delivered in a latrine bucket. Rebecca, the child of a broken mother, with a calloused heart. This Rebecca. with so many odds stacked against her, began to heal and to thrive. 

Rebecca now weighs 2lb 9.5 oz. I have struggled with this tiny, fragile infant. Twice, I weaned her from her CPAP, only for her to become ill with bronchilolitis, then a simple cold, and need more CPAP support than ever before. On the third attempt, I was finally able to get Rebecca off of CPAP and onto a nasal cannula. A constant flow of compressed air and daily caffeine ensure that she continues to breath. 

When I worked in Scotland, it was exceptional for a newborn with bronchiolitis not to need mechanical ventilation. During the long course of Rebecca's recovery, I have learnt a lot about the potential of bubble CPAP, and about it's capacity to save the lives of tiny infants, born in Haiti and in other countries that don't have the personnel or the resources to place them on mechanical ventilators. I sincerely hope that more Doctors and nurses working in hospitals and clinics in the developed world will catch on to the bubble CPAP principle.

Of course, Rebecca is the child that God has placed in front of us, so please continue to pray for her and for her Mother. Pray for continued healing in Rebecca's body, and for her mother's wounded heart. I really believe that all women are called by God to a mothering role, to love sacrificially and to nurture his children. I think that Rebecca's mother denied this part of her nature because she was badly hurt, and overwhelmed - afraid that tenderness would drain her, open her up, and increase her vulnerability. She is now showing concern for her baby and for our other NICU infants. This softening of her heart tells us that our prayers have been heard and that God's hand is on both of his children, the mother and the daughter. He is with them and in them, whether or not they know it, and because of that, Rebecca's mother can not 'forgret' her.

'Can a mother' forget the baby at her breast

  and have no compassion on the child she has borne?
Though she may forget,
 I will not forget you!' Isaiah 49:15