Brooke

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 (Camp Victory) for children with CHD, not knowing at the time that the baby I was carrying also had complex CHD.

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 Troy and I had to change weekly. She couldn't eat enough by mouth to gain weight so we gave her overnight feeds. She was on a lot of medicine then.

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 placed. Unfortunately, she had a bowel obstruction and went back into the operating room for emergency surgery. Very scary!

Between then and now, she mostly has had problems with eating- she hates it! She went through a wonderful feeding program at Hershey Medical Center and is now off of the tube. Actually, it turns out the G-tube was causing intermittent obstructions and making her feel horrible after getting fed. She still fights us to eat and only eats pudding, yogurt, and drinks milk, Carnation Instant Breakfast, and Gatorade. She is due to have her Fontan done at Hershey (Dr. Gilbert moved) in early August. After that, we'll probably ask for more help from the feeding clinic.

Brooke is such a happy, pleasant little girl, and she's very tough. She was slightly delayed with her motor skills, but not anymore! She keeps up fine with kids her age, but she does get winded at times and turn shades of blue. Her sats are usually 82%. The Fontan should improve her sats to the low 90's and improve her exercise tolerance.

She's an amazing person who has been through a lot-most of it, thankfully, she does not even know about yet. We've been through some very scary 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 Brooke and for creating special people dedicated to CHD.