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Madison
Madison was born with a syndrome called Digeorge Syndrome or 22q11.2 deletion. Many babies
born with this syndrome have heart defects along with many other things that affect their daily lives. Madison
has Truncus Arteriosus which required open heart surgery when she was only eight days old. She then had trouble
with her calcium which required daily medication. She has a cleft palate which made it really hard for her to eat
and so she had a feeding tube put in her tummy when she was 2 months old.
Her immune system is also affected by the syndrome and she has very little ability to fight
infections which means that a virus or an infection can cause her many days in the hospital. Madison complicates
matters by being really tiny.
She is almost two years old and she only weighs about what a normal 8-10 month old weighs.
Because she is so tiny they have tried to hold off on her surgery until she reached 20 lbs. She has had 4 heart
catheterizations the last one resulting in the news that she would again have to face open heart surgery. The day
before the surgery we were told that there was not enough blood to handle Madison's surgery for the following day
and they had to postpone her surgery.
Her new surgery date is Dec. 11th. They will replace a pulmonary valve and repair the pulmonary
arteries where scar tissue has narrowed them to the point where it was affecting the heart function. They will have
to slice and patch them. I wish I could say that this will be her last surgery but this heart defect can only be
managed with open heart surgeries well into her adult life.
Thank you for listening to Madison's story. |
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