Our little miracles (18/2/12)
This little princess is Hannah. And for us, she’s one of a kind – the very first baby to survive here with a condition called gastroschisis. And yesterday, she went home.
Gastroschisis is one of those conditions that, when a surprise, strikes fear into the heart of a mother who has had her baby at home. A seemingly normal pregnancy – but when the baby is born, the intestines are hanging out of a hole in the abdomen. Not covered by anything – an eviscerated, crying baby. And inevitably, before help can be found, the intestines twist and the baby’s gut dies, or infection sets in, and the baby just succumbs.
In the West, we diagnose this condition prenatally by ultrasound, and the mum delivers in a high-risk hospital by c-section 2 weeks before term. The gut is kept sterile and untwisted by hanging it in a silo (which looks like a big, sterile condom), and over a few days the gut gradually settles back into the abdomen. The surgeons close the hole, and 90% of the babies goes home, healthy.
In Kenya, prenatal care is becoming more common. Prenatal ultrasound, however, is not common, and for those who have one the defect might not be picked up. And so the last 2 babies I have seen with this condition arrived at Kijabe from another hospital, wrapped in almost-clean blankets – one of them with a note that said “suspect hernia”. I think I was as surprised when I opened the babies’ blankets as their unsuspecting mothers had been.
This year, our mortality has been 100% up until now. Babies born at home or at other clinics have come to us with probably early infection or a dwindling blood supply, in addition to the 48 hours or more that these babies have not been able to digest food. Add that to often a day or two extra delay in us obtaining intravenous nutrition (“TPN”) after they arrive here, and the combination has been fatal.
We have been so devastated to see these babies die. Erik and Ruth, giving outstanding surgical care, with Jennifer and I trying to help the baby fight infection and catch up on nutrition, have been unable to overcome the baby’s rough first 24-48 hours.
Hannah was born at Kijabe on January 3rd, a 4-week early surprise for her mother in more than one way. But because she was born here, our team was able to fire all of our ammunition at her – antibiotics, high-calorie IV feeds, warmth, sterile handling of her protruding gut, a lot of prayer. Her gut was strung up in its protective sock and over 3 days slowly fit back into her accommodating belly. Erik and the team closed the little remaining hole with the complex sounding “Bianchi Procedure” – pulling the remnants of her umbilical cord over the hold and just taping it into place with steri-strips.
A few days later we started to gingerly feed her gut, still getting settled in its new home. After her gut figured out how to absorb milk, she had to figure out how to breastfeed. She took a little while to gain weight, and was slowed down by a blood infection that she fought off. Every day we’d come into work with bated breath – was Hannah still doing OK? Every day we were praying that she would make it – that she’d be our first gastroschisis miracle.
And yesterday after 45 days in hospital, she went home. Two weeks ago, her replacement arrived – baby Naomi, also with gastroschisis. She was born at another hospital but was well cared for and transferred to us by 7 hours of life. Already her little gut is safely nestled inside her belly, and yesterday she was tolerating full feeds and her IV fluids were stopped.
I love the names of these 2 little girls. Hannah – named after a woman who, after desperately prayers after childless years, bore a son, Samuel, whose life she dedicated to God. Naomi – whose bitterness at the loss of her husband and sons was healed by her daughter-in-law’s dedication and love. Both women whose lives of struggle and loss were healed. I am so grateful to see the chance for new life for these two potential remarkable women, passing through our nursery at the start of it all.