Friday, 1 January 2010
A little someone has been on my heart this Christmas, and up until yesterday, I wasn't exactly sure why. She is a year and a half old, and she has a debilitating illness called Sickle Cell Disease.
'Lovely' (not her real name) did not catch sickle cell disease. Rather, she inherited it from her parents, both of whom, if not actually sick themselves, would have been 'carriers' for the condition.
It is because she has two defective copies of the gene that is responsible for producing haemoglobin, that Lovely is sick; she is not able to produce normal haemoglobin - the protein in red blood cells that contains iron and that binds to oxygen. Instead, she produces abnormal haemoglobin, and this abnormal haemoglobin makes her red blood cells jagged or sickle shaped.
These sickle shaped cells are very fragile and rupture easily. As a result, they have a short life span, and because of this, Lovely is constantly anaemic and sometimes jaundiced as well, from the constant destruction of large amounts of haemoglobin.
Due to their abnormal shape, her red blood cells also 'sickle' (get stuck together) and block her smallest blood vessels, especially those in her bones, in her liver, her spleen and lungs. This can be very painful. It also predisposes Lovely to severe, life-threatening infections; her spleen, which plays a very important role in responding to disease causing microbes, is largely non functioning and Lovely is immuno-compromised as a result.
Children with Sickle Cell Disease suffer from crises (episodes of pain and anemia) aswell as from infections such as pneumonia. There is also an increased chance that children with sickle cell disease will experience stokes. These stokes can cause brain damage. Sometimes that brain damage is permanent. The outlook just is not good for children with Sickle Cell Disease.
At GLA, Lovely is observed constantly. She must drink plenty of fluids to prevent 'sickling crises' and she needs nourishing food, extra vitamins and preventative antibiotics every day. Stomach pain, fever and breathing problems have to be promptly identified and investigated. We cannot allow her to become dehydrated and so when she is unwell, we have a very low threshold for doing blood draws and for starting IV's and strong antibiotics.
I have searched my heart, wondering why Lovely has been on it for the past two weeks. Is it because I am away on holiday, and she is fragile, and my watchful eyes are not upon her? That may be part of the reason, but there is more to it than that....
As I contemplated the question of why Lovely was prominent in my thoughts, I re-called an earlier conversation I'd had with GLA's Director. During that conversation, I learned that it is difficult to find families who are willing to adopt children with sickle cell disease. The prospect of watching them suffer, and knowing that there is no cure for this horrible disease that can lead to brain damage or sudden death is simply too much for most families to bear.
Yes, that's it. Lovely is a baby, just like all the others at GLA, and she is with us for the same reason the other babies are. Waiting. Each baby waits for a family, because we believe it is every child's right to live in a secure home, with loving parents. I know that Lovely will probably wait longer than most of our babies for her 'forever family', and, somewhere deep inside, I feel the injustice of this, especially at Christmas. After all, every child needs and deserves to be held and rocked and loved and cared for, and sick babies need these things more, not less.
There are a number of special needs children at GLA, awaiting families. Lovely, and our two little boys who are HIV positive will be the most 'difficult to place'. That is on my mind just now, so I will be praying, as I hope others will, that 2010 will be their year. The year that the families, who are being perfectly prepared for the task of raising our little ones and loving them, whatever may come to pass, will step up to the plate and say yes to these beautiful children of God.
Posted by Susan Westwood at 14:02