Sonia: A Reason to Celebrate

At the end of a difficult and emotionally taxing week, there is reason to celebrate:

Little Miss Sonia has been off her oxygen for 8 days. She has been oxygen dependent for the past two months. For much of that time, dozens of people in North America have been working hard to try to secure the care that Sonia needs, overseas. They are hitting many obstacles and, at the same time, coming across many new opportunities.

Those of us who are working with Sonia in Haiti celebrate that she is now stable. Please pray that she will remain healthy over the next few weeks. Many children with Downs syndrome are deficient in a particular immune protein, which, makes them very susceptible to infection. This may explain why Sonia gets so many severe infections, and why it takes so long for her to recover from illnesses that other babies bounce back from very quickly.

For now, Sonia does not leave the nursery with our volunteers. She does come out of the nursery with me and she gets plenty of love and attention from all of the NICU staff. Although she is a little bit spoiled, Sonia is a very sweet baby, and completely undemanding. She is still weak from her most recent illness and finds it difficult to suck from a bottle. Despite this, she continues to make progress in her development.

I believe that Miss Sonia will surpass everyone's expectations of her. It is highly likely that she will leave GLA, very soon. It is my privilege to love her and care for her, even if it is only for now.

Longing For Life

Francisca died in the early hours of Monday morning. She had, what I think was a severe septicaemia. Her last 10 hours were the fight of her life, a struggle, all the way to death. The Haitian staff say, if only Francisca's mother sought pre-natal care sooner.... I say, maybe if the baby had received different antibiotics....

Tania followed Francisca in death last night. In the first photographs we took of Tania, her lips were blood red, cracked and bleeding. As she became better hydrated, they healed, leaving underneath the scab, a horrifying, unatural pallor. Tania was profoundly anaemic, and died before we could obtain donor blood for her. If only we had gotten it in time. If only......

Over and over, babies pass away. I am sure that these defeats are etched into my face. Time and again, jagged breath fades, colour drains, fists uncurl, and the weight in my arms becomes emptiness. Shoulders sag, and eyes dull. Even so, we go on. We owe it to the next child, and the child after that. I long for them.

Francisca might have lived had we had a drug that would neutralize the acid in her blood. Tania might have lived had she received a blood transfusion in time. We will be taking steps to make sure that both of these things are available to the next infants that are entrusted into our care. Though the dying takes it's toll, for love of life, we have to move forward.

Francisca

By the time the staff at Real Hope for Haiti called on Wednesday, to tell us that rioting in Cabaret was preventing them from transporting Tania to GLA, another tiny infant, born 7 weeks prematurely and weighing 3lb 2 oz was in their care. Would we accept this infant for medical care as well? Dixie Bickel said, yes.

Francisca is here with her young mother. Francisca's blood sugar was low when she was admitted and within hours of arriving, her oxygen level had dropped and her breathing became laboured. She was given IV dextrose and she was started on bubble CPAP. 30 minutes later, she had stabalized.

Over the past few days, Francisca has been unable to digest breast milk. She began to have apnoeas (periods during which she stops breathing, and her heart rate drops.) Her CPAP is running with compressed air and a small flow of supplemental oxygen. The force from the CPAP gasses helps Francisca with her breathing and prevents the apnoeic spells.

While this baby fights her infection, she is receiving respiratory support in her incubator, together with IV fluids and antibiotics.

Three sick infants: Two in incubators, one on oxygen and cardiac medications, one on CPAP, two receiving IV rehydration and antibiotcs, one on continuous feeds, all requuiring close monitoring and round-the-clock care.

In terms of the space and technology that is available to us, GLA's NICU has almost reached the limit of its capacity. I am so glad that we are able to care for these three sick infants, simultaneously. I feel blessed beyond measure, by Sonia, Tania and Francisca and I am glad that we were able to say yes to each one of these beautiful girls.

Tania

Two babies arrived from Real Hope For Haiti on Thursday. Both were in need of urgent, specialized care that very few hospitals or NGO's in Haiti are in a position to provide.

Tania is 6 weeks old and weighs 3lb 5oz. Hers is an incredible story of love and survival against the odds. Tania was born in the amniotic sack, an unusual phenomenon that almost cost the baby her life. Although she survived, her mother did not.

Tania was admitted to a poorly resourced hospital, where she experienced neglect and starvation, before developing diarrhoea and vomiting. Recognising that her condition was life-threatening, her widowed Father transferred Tania to another hospital, where the staff were unable to start an IV. His last hope was Real Hope for Haiti, a rural clinic in Cazalle, close to the family's home. By the time Tania arrived there, she was so dehydrated that her tiny veins had collapsed.

By God's grace, an experienced Paediatrician was volunteering her time at Real Hope for Haiti. The Paediatrician managed to site an intra-osseous line (a needle that is screwed or drilled into the bone marrow. It was an intervention that saved Tania's life.

Tania arrived at GLA 36 hours after Dixie Bickel received the call, asking us to accept this baby for medical assistance. Riots in Cabaret prevented the clinic staff from travelling with Tania. Without that needle in her bone, Tania would certainly have died of dehydration. This tiny girl, all jutting bones and loose skin is very fragile. Her sodium and potassium levels were dangerously low when she arrived and she is extremely anaemic. She has barely been fed since she was born and is not able to tolerate enough milk to stay hydrated, even if it is drip fed continuously via a feeding pump. We have to be extremely cautious with her IV fluids - dehydration is often over-estimated in severely malnourished children and in her present condition, too much fluid could send Tania into heart failure.

With antibiotics, her diarrhoea and vomiting has are under control and she is able to tolerate larger volumes of milk. She had a set back this afternoon, when we ran out of pasteurized breast milk and started her on formula. Tania went on to vomit, what Dixie and the Haitian nurses estimated to be around 15 ml of fresh blood. We have taken emergency measures to stabilize Tania, until we can send her blood to be 'typed and cross-matched' when the lab open on Monday. It looks as though baby Tania needs a blood transfusion.

I am in awe of this tiny baby, so incredibly weak, so stricken, and yet, surviving!

October's Child

My three month old baby, Sonia, is sick, critically sick. Today, she was sicker than she has ever been. She was unstable, even on CPAP, and I feared for her life.

She is a sweet, alert, contented baby when she is well. When she is not, she fights and flails and roars angrily, until her puffy eyes bulge. Today, the battle for breath sent Sonia into combat mode. 'Sonia, enough!' I pleaded, from across the room, as a nurse tried to adjust the prongs in her nose. Hearing the command, Sonia stopped fighting, and turned, fixing her gaze on mine. What does that tone mean, Miss Susan, she seemed to ask? I think I better pay attention to you......

Pay attention she did, following me through a 120 degree angle, as I crossed the NICU floor. Oh my! 'Ladies,' I declared to the nurses and nannies, 'my girl is really bright!'

'She is not October's child!' Madame Bernard replied. 'October's children are not inteligent.'

'Pardon? What do you mean by that? October's child? Do Haitian's call all people born in October, dim?'

Monday's Child is fair of face,

Tuesday's Child is full of grace,

Wednesdays child is full of woe.....

My heckles were up. Sonia probably has Down syndrome. I am determined that she will not be cast under any sterotype.

'No, Susan,' the nurse replied, patiently. 'I meant that babies born in October of last year aren't really doing anything intelligent, yet.'

'Sonia wants to hold her bottle,' Someone said. I nodded, beaming with pride. That's usually the work of a 5 month old, not a 3 month old!

As we talked, I was changing Sonia. Her arms were inside her sleep suit, so that she would not mess with her nasal prongs while I did that. Suddenly, thorough the arms holes, out pop both of Sonia's arms! At what age do babies learn that?

We all laughed! Sonia does this consistently. She can also remove mittens that are taped on to her!

'She is October's child' I told the nannies.

'With lots of spirt!' someone added.

At the end of this rough day, I am hearing Sonia's monitor alarming, even though it is not, and I know I will be hearing it in my sleep.

I love this little lady, who needs a passport and US medical visa, as a matter of absolute urgencys so that she can receive life-saving surgery and medical care that cannot be provided in Haiti.

In my heart, I feel confident that this will happen 'in time' for Sonia. I have an assurance, as inexplicable as it is absolute, that God has a plan for Sonia, that includes, life, hope and a future. I believe that her 'spirit' is God-breathed and that it will sustain her.

The Dawn Of Remembrance

Everywhere I turn, there are reminders that the date is approaching. On the Internet, on television, on posters outside the store, on the radio, at church.

Though I wish they wouldn't, memories rise and swell out of the darkness, pressing against the dam..... The terror of the day the earth groaned and convulsed. The bewildering aftermath. The uter devastation. The fear. Overwhelmed exhaustion. Terrible grief. Doubt.

2010 stunned Haiti. The Christmas and New Year festivities were muted. A heaviness hung in the air, a bitter perfume. Tangible, like myrrh.

All celebrations are not festive. Sometimes, the steps of the dance are slow, the violins trembling, as shoulders heave, tears fall.

This dawn of remembrance is streaked by bruised hues.

'Blessed are those who mourn, for they will be comforted'.......

Christmas Came Late......

On Christmas day, Sonia was sick, and on CPAP, and it didn't seem right or fair that this bright-eyed baby should miss out on her first Christmas. Christmas celebrations were postponed in her nursery. By Monday, her condition had improved to the point that she had been weaned off of CPAP, onto oxygen. So it was on Monday that we marked our saviour's birth the NICU babies.

Most fixed theireyes on the brightly wrapped gifts. Some, young though they are, were absoloutely delighted by their new soft toys.












For Sonia, the bright tissue paper was at least as facinating as the tiger that I unwrapped for her!














It was on Monday that Sonia smiled for the first time. The poignancy of that smile goes without saying. I returned the smile, blinking back tears.

I have never known a tiny infant quite like Sonia - so sickly but so strong, so alert, and, despite being critically ill twice in less than three months, almost on track developmentally.

Oh Sonia, my feisty, but fragile fighter. My gorgous little girl, you need advanced respiratory support everytime you catch a little cold..... You will give me grey hair and wrinkles, and I am far too young for either of these things! I, your very own Maren (God Mother) want to wrap you in cotton wool and I feel like cursing anyone who coughs sneezes or sniffles within 100 yards of you.

My prayer for you in 2011: that you will grow big. Become strong. Thrive developmentally. And that a wonderful family, hand-picked by God, will choose you to be their daughter.