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Supporting Aussie Kids with Kabuki Syndrome Inc.  
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Bryce's Story
- By Stacey

On Wednesday the 12th of December 2001, at 37 weeks pregnant, I went  in to the Geelong Hospital to have an ultrasound. The doctors weren’t overly concerned but wanted to check our babies size, as it felt very small (and hadn’t grown in 5 weeks). I could tell that something wasn’t quite right, but nothing was said. I wasn’t told to see the docs immediately so I assumed it wasn’t to bad and as I was due to see the doctors in two days anyway we tried not to worry to much about it.

At 2.30pm on Friday the 14th December I went in to the hospital for my appointment.  Before I had even sat down the doctor (I can’t remember her name) told me that there wasn’t enough fluid around our baby and that it had stopped growing at least five weeks earlier, and was still very small (approx 5pounds). Then she told me I had to come in to the hospital in the morning to have a caesarian. I just looked at her, sat down, and then burst into tears. Then I stood up and just walked out of the room crying. Darrin (who was working at the hospital that day) arrived at that moment and took me back into the room to talk to the doctor. Everything was arranged for our babies birth the next day.

At 7.30am on December 15th Darrin and I walked into the maternity ward at Geelong Hospital as we were instructed to do. Once settled in, a paediatric registrar came and spoke to us about what would happen once our baby was born. A lot of low birth weight babies have low blood sugar levels and need to have an IV inserted to supply glucose to maintain the levels until the baby can do it alone, usually taking a couple of days.

We were taken to theatre at 9.45 and our roller coaster ride began. At 10.40 we gave birth to a gorgeous baby boy, who we named BRYCE JACOB McKIERNAN, he weighed 2.43kgs (5pounds 4ounces). He was so tiny (our last baby was 4.540kgs) and he looked just perfect. As suspected he did have low blood sugar levels and needed to go to the special care nursery. He was whisked off pretty much right away.

In the nursery Bryce was put on oxygen, this happens with lots of babies and isn’t a huge concern(we were told). Later in the day I went with Darrin and the kids down to the nursery to introduce Tori and Riley to they’re baby brother. While there I attempted to breast feed Bryce, but although he had not been fed yet, he just didn’t seem to have the energy. Again we were told this was normal newborn behavior.

By next morn we were told by the paed reg that Bryce was doing much better and as his sugar levels were stabilizing he would probably be up on the ward with me in a day or so. Three hours later the same man came and told us that Bryce wasn’t coping very well and his need for oxygen was increasing rapidly. And after having a blood test, ECG, and chest x-ray, it was thought he had a heart condition called Hypo-Plastic Left Heart Syndrome. After consulting with a cardiologist (Dr Andrew Davis) at the Royal Childrens Hospital in Melbourne, another IV was inserted and Bryce was started on a drug called prostin and it was decided that a team of doctors called Newborn Emergency  Transport Service (NETS) would drive down to Geelong from Melbourne and take Bryce to the Royal Childrens Hospitals Intensive Care Unit.

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