A Tale of Two Hearts (16/12/11)
We see a lot of babies here born with heart problems. Usually they come to us at a few days, weeks or months of age with a puzzling lack of growth and trouble breathing. An xray shows a heart like a balloon, and an echocardiogram shows a heart that looks like someone twisted it like a Rubik’s cube, and now none of the connections are in the right place. We sit down with the families and tell them that these problems cannot be fixed in Kenya – and then we send the babies home to die.
But this, week, for the first time, we found heart problems that maybe, just maybe, we can do something about.
Michael (top left) is 5 weeks old. You may remember him from my previous post about the strike – he was the 4 week old baby arriving in heart failure, with no money to pay for his care. This week we, through people’s generous contributions to our Needy Children’s Fund, were send him to get an echocardiogram by a cardiologist in Nairobi.
His heart showed a relatively simple problem – most connections in the right place, but a severely narrowed pulmonary artery (joining the heart to the lungs). This has meant most of his blood just goes into his heart, and takes the easy route through a sneaky little hole straight to the aorta, bypassing the lungs, and back into the body. This is a problem – the lungs are Oxygenville, and if the train skips that station then Mr Engineer (the heart) has to work harder and harder to get at least some of the blood through the narrow artery into the lungs. And over time, the heart just wears out.
So our cardiologist has recommended that he get a relatively simple surgery – where a balloon is inserted via a leg vein up, up, up into the heart, and then inflated and pulled through the narrow artery to widen it (pulmonary valvuloplasty). Voila, the blood flows into the lungs and this baby has a chance at a long life.
This relatively simple surgery costs 250,000KSh – around $2500. An astronomical sum, out of this family’s reach. But we are starting to investigate options to try and raise the money to pay for this surgery. In the meantime, he will stay in the hospital. We wanted to send the family home with oxygen for him, but you can’t have oxygen in the same room as a cooking fire – and when you live in a tiny one-room home, your options are limited.
Peninah (right), is a gorgeous 9 month old who came to us 2 weeks ago. Her devoted parents have employment, an income, a home. But she wasn’t gaining weight well, and when she came to us we found a dangerously low oxygen level, and heart sounds that instead of going bah-DUMP bah-DUMP bah-DUMP, went SHGGGGG SHGGGGG SHGGGGG. Her echocardiogram was a little more like the Rubik’s cube – instead of 2 separate ventricles pumping the blood to either the lungs or the body, she has a single chamber in which the blood all mixes and then goes its merry way. She also has a narrow artery like Michael’s so most of the time the blood chooses to bypass the lungs and go back to the body, with just a small portion getting the oxygen it needs.
Remarkably, a surgery is available in Kenya that could help her – a Glenn shunt. This is essentially a graft, or short hose, that will connect her heart to the lung artery, away from the narrow portion, and allow more of the blood to get oxygen. It is a much more complex procedure, as it is actually open-heart surgery, so we were astounded to hear that Peninah’s Dad’s employer had an insurance scheme to cover it.
Or, as it turns out, some of it. This surgery will cost 650,000-750,000 KSh ($6500-7500), and her insurance will pay for 150,000 of it. This still leaves 500-600,000 KSh to raise – still an astronomical amount for this family who have gainful employment, but not a lot to spare. We are also looking into options to help this family, and the family is looking into raising money through a Harambee (community fundraising celebration). Peninah may be able to go home on oxygen next week if she is not deteriorating, and wait to see if the funds can be raised.
And that is the joy and the tragedy of medicine here. The procedure is available – but may be financially out of reach. If we raise the money for this operation, it will be spent at a private hospital, lining the pockets of the administration and surgeon as we try to save these two sweet hearts.
We are grateful for Simone Anders at Help a Child in Germany, who has started to try and raise money for us to help Michael and Peninah. You may remember Shunetra’s story, and it was through Simone that we were able to pay her hospital bill and ease some of her mother’s grief. If you want to help Michael or Simone, please contact Simone or let us know.