What Could Be Done For Connall
Unfortunately not much can be done for Connall, and his condition.
If it was just the Hypoplastic Left Heart Syndrome he was suffering from, then there would be a series of operations he would have, the first one within the first few hours after being born. With some more when he gets older. The main aim of the operations would be to remodel the heart so that it works like a single pump rather than two in the case of a normal heart. And the ultimate operation would be a heart transplant.
The first operation might be the Norwood Procedure (sometimes it may be modified). This helps blood to flow around the body and to the lungs, via a shunt (artificial passage way). And also to provide a permanent passage between the left and right atrium's.
The second operation might be the Cavo Pulmonary Shunt or the Hemi Fontan operation. This is usually done between four to nine months of age. the main aim of this operation is to maintain the flow of deoxygenated blood to the lungs, by replacing the shunt from the last operation by attaching the upper body vein to the pulmonary artery.
The final operation might be the Modified Fontan Procedure. This is done when the child needs more blood to flow to the lungs, this might be just before they start school. the aim of this operation is to separate the deoxygenated blood from the oxygenated blood, and this can be done in two ways.
The Internal Fontan is where a wall in the right atrium is created and then attaching the atrium to the base of the pulmonary artery (lung artery). This might cause an increase in pressure in the lungs so a small hole (fenestration) might be created in the wall.
The External Fontan is where a tube of heart tissue from the lower body vein is attached to the base of pulmonary artery (lung artery), again a small hole might be made within in the wall of the right atrium to relieve some of the potential pressure build up in the lungs.
But unfortunately his problems are amongst some of the most severe when they are together like this. His chances of surviving the first operation are very low. With that we have decided not to intervene medically when he is born, but to let him last as long as possible with us and not on an operating table.
We were offered an amniocenteses test at 20 weeks to find out if if his condition was genetic or not, but after much consideration we decided not to but as there is a risk of miscarriage with this, we opted not to have it, but to find out later when he is born. This can be done by taking a sample of umbilacal cord blood, after birth.
On the 13th July 2004, we found out that Connall's condition was not genetic, and that there was nothing wrong with the chromosomal structure of his DNA.
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29 August, 2004