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Case in Progress

Cameron's open heart surgery follow-up

Cameron is a little girl with Down Syndrome. Approximately 40-45% of children with Down Syndrome are born with heart defects.

In Cameron's case she was diagnosed with endocardial cushion defect and small patent ductus arteriosis, (PDA). The PDA closed over several days following her birth. Due to the endocardial defect Cameron has been taking lanoxin and furosemide to help her heart to contract with more force and function more efficiently.

Cameron was scheduled for open-heart surgery and the surgery was successful. A few weeks later, her parents sent us this report.

Hi Julie!

Cameron Leigh Crows was born on November I0, 1997. What a day that was! At 11:31 a.m., Cameron joined our world through a normal delivery. The doctor had to suction her out because her heart rate was dropping. After the nurses stabilized her, I was able to hold her.

It was at that time that my doctor told us he thought she had Down syndrome. She had a few characteristics that made him feel this way. Mainly, her low muscle tone, and the single line across her hands (rather than the two that most people have). I can honestly say that we weren't that upset hearing those words — Down syndrome. To us she was our beautiful little girl!

Cameron was taken away to the Neonatal Intensive Care Unit (NICU) because she wasn't able to get enough oxygen on her own. About an hour later the Neonatologist came to see us. They had done an Echocardiogram (basically, an ultrasound of her heart). The Echo showed that she had a heart defect, AtrioVentricular Septal Defect. This is the news that made us cry. What a way to start off in this world! The doctor told us that it was operable and that it was a common defect in. babies with Down syndrome.

Cameron had to stay in the NICU for 1 week, because the blood vessels in her lungs were not "transitioning" from the birth, and so she wasn't getting enough oxygen. It seemed like forever but eventually the vessels opened up and we were able to bring her home.

During her first, month I tried to learn as much as l could about her particular heart defect. I wasn't too concerned about the Down syndrome at this time. I was told by a few people to call our local Regional Center, because she had Down Syndrome. I called, not really knowing why or what they would do. Within a month Cameron was receiving physical therapy at home twice a week from Pediatric Services. Because she has Down Syndrome she qualifies for services as part of the California Early Start Program!

Cameron was about 2 months old when services started. I was told right from the beginning we needed to put her on her stomach more because she was lacking strength to hold her head up.

By 4 months she had rolled over, not consistently, but rolling over nonetheless!! Her neck and head muscles were improving. We are learning a lot about how to help her.

Her pediatrician told us we could start feeding her baby cereal now. Well, I quickly learned this was easier said than done! Cameron didn't know what to do with the food in her mouth. The physical therapist said this was also because of her low tone, since the muscle, tongue and coordination has to do with her muscles. Whatever the case, I gave up!

I tried again a few weeks later, right about the time she was learning how to make spitting sounds with her tongue. Needless to say, I had more cereal sprayed on me than Cameron had in her tummy!! I decided to try again later...

At 5 months Cameron had open-heart surgery to repair her heart defect. We thought she was doing well, but the cardiologist said she was having trouble keeping her oxygen levels up enough. Because she has Down syndrome, the surgeon told us that the most challenging part, would be getting her off the respirator after the surgery.

Not to brag, but... she was off the respirator approximately 30 hours after surgery. She was out or the hospital 4 days after surgery!! We were all amazed at her quick recovery.

While she was in the hospital she didn't smile once (for obvious reasons). When we left the hospital we went to the Ronald McDonald House to spend one more night before we drove home. That night she smiled once! When we were got home Saturday night, she just started laughing!! She was as happy to be home as we were. Actually, I think she was MORE happy!

One week after surgery, you could tell she was still sore. She didn't move around too much, and she couldn’t hold her head up like she could before her surgery. She could not be on her stomach — even on a pillow.

Two weeks after surgery, she was almost back to her normal self! She could hold her head up again, she was rolling over, and she was even eating baby cereal!! She wouldn't spend too much time on her stomach, though.

Three weeks after surgery she's doing all of the above plus staying on her stomach for as long as before surgery and holding her head up 45 degrees while on her stomach. She can. also sit up with support — either holding her waist or her holding onto your hand/fingers.

As she resumes physical therapy, we're looking forward to each milestone Cameron reaches. The big ones as well as the little ones. We are truly Blessed!

Tony and Becky Crowe

For more information

National Down Syndrome Congress
1605 Chantilly Drive, Ste 250
Atalanta GA 30324-3269
(800) 323-NDSC
(404)633-1555
Fax (404) 633-2817
e mail: [email protected]

Canadian Down Syndrome Society
811 14th Street, NW
Calgary, AB Canada T2N 2A4
(403)270-8500
Fax (403) 270-8291

Babies with Down Syndrome -- A New Parents' Guide, Second Edition
from The Special Needs Collection , Edited by Karen Stray-Gundersen, Woodbine House
Available at most bookstores, ISBN 0-933149-64-6

 

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Last modified: January 26, 2013