In Septemeber 2008, I traveled 6000 miles to Haiti's Kenscoff mountains. My mission: to care for some of the orphaned and abandoned, the sick, malnourished and premature infants of this beautiful but beleagured Caribbean nation.

Friday, 1 January 2010

On My Heart

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.


Anonymous said...


I just found this post about our daughter. I hadn't kept up with your blog as I didn't know about it until after we brought Dany Love home. I wanted you to know that I know exactly why Dany was on your heart at that time. You see, we had been contacted about Dany earlier in the year (November or so) and after much prayer and a heavy heart said yes to being her forever family but at that time there was another family that had said yes before us. We decided that God must have chosen that family for her instead but asked our social worker to please let us know if something didn't work out with the other family. On December 23, our social worker contacted us again and said the other family had backed out and asked if we were still interested. We decided to "table the matter" until after the holidays and while I was on winter break, I would do some heavy praying about her. Just a few days into January God spoke clearly that we were to be hear family and "to not be afraid." I believe God placed Dany Love and us on your heart at that time in an effort to work on our hearts, to move us forward and to not be afraid of being her family. We just celebrated her 2nd birthday a few weeks ago and she is so happy. She runs around chasing her brothers, talking, and acting like a big girl. Medically, she has been in the hospital one time in May for a pain crisis but otherwise she is doing great! We are sending pictures soon! I will kiss her and tell her Susan says hello!

Anonymous said...

Susan, I am Dany Love's paternal grandmother. It is just amazing how she bubbles with happiness and spreads it to those around her. She is so precious to our family. My son and his wife have a biological child and another adopted child, Samuel, from Guatemala. We got him when he was 10 months old. While it is obvious she loves the other sibling, Drew, Dany seems to have a stronger bond with Samuel and it makes me wonder if somehow it's because they are both adopted. Sam was old enough to understand the process as the family waited to get Dany and probably realizes to an extent that the situation was similar when he was coming into our family. Samuel is five years old and tries to protect Dany for harmful situations. Their relationship is so very precious.

Dany has had no pain episodes since the one that occurred last May. We have a wonderful children's hospital in Kansas City that cares for her when needed. What a blessing!

Thank you for all of your work at GLA. It must be frustrating and difficult but also rewarding--along with a little sadness when the children go to their adoptive families. You are in our prayers.