We learned about Brooke's heart disease at my "routine" 22 week ultrasound. As a doctor myself, I always felt if any family members needed heart surgery, it would be done by Dr. Christian Gilbert and so we switch my prenatal care from Hershey Medical Center to Geisinger Medical Center.
Brooke has a syndrome called heterotaxy consisting of complex congenital heart disease, asplenia (absence of spleen) and malrotation of the bowel. Heterotaxy syndrome is a problem with the orientation of the body and occurs very early in gestation when the heart should twist a certain way. Ironically, at this crucial time in pregnancy, I was doing my rotation through pediatric cardiology and also went to a camp (
Brooke was born April 2nd and was taken to the NICU shortly after birth. She had a cardiac MRI done and went for her B-T Shunt on day 2 of life. She did well with that, but was in the NICU for 6 weeks due to pericardial effusions, malrotation surgery, reflux, and feeding issues. She came home with a nasogastric feeding tube which
She had her Hemi-Fontan done at age 5 months and was only in for 6 days! She still did not eat much by mouth and had a fundoplication (to prevent vomiting) and G-Tube (feeding tube) placed. Unfortunately, she had a bowel obstruction and went back into the operating room for emergency surgery. Very scary!
She had her Fontan done at
Her hardest hurdle to overcome has been her nasty feeding disorder. She went through a wonderful feeding program at
Brooke is such a happy, pleasant little girl, and she's very tough. As an infant she was delayed with her motor skills, but not anymore! She keeps up fine with kids her age. She is now done with any “planned” surgeries and sees her cardiologist twice yearly. She no longer turns blue nor appears short of breath. She takes 2 heart medicines and an antibiotic daily.
She's an amazing person who has been through a lot-most of it, thankfully, she does not recall at this point. We've been through some very frightening times with her, but with time the memories of those times are being replaced with newer, happier moments. She brings us joy in everything about her. Her expressions, what she says and does, how she interacts with others and her whole outlook on life are constant reminders about how precious life is.
We feel very lucky to have such a wonderful daughter and are truly grateful for all the medical and surgical advances in congenital heart disease. We thank God for giving us Brooke and for creating special people dedicated to all aspects of CHD.
— Angie and Troy, Brooke's parents
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