Monday, July 10, 2006

Klinger family heart story by heart mom Angie Klinger. http://users.adelphia.net/~brookesbrokenheart

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 (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 Hershey Medical Center because Dr. Gilbert moved to Tennessee and Brooke’s cardiologist moved to Hershey (ironic because that is where this all started with the pre-natal ultrasound). She did great, had surgery on Monday (extubated in the OR!) and came home Friday!

Her hardest hurdle to overcome has been her nasty feeding disorder. She went through a wonderful feeding program at Hershey Medical Center and her feeding tube has been removed. Actually, it turns out the G-tube was causing intermittent obstructions and making her feel horrible after getting fed. She is just now getting “over” the feeding disorder and is eating a typical pre-school diet. Through it all, her feeding disorder was the hardest thing to get past.

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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