Mulak-MacPhee, Owen

[left:66da52aef0]http://www.cherubs-cdh.org/Album/new/Mulak-MacPhee.jpg[/left:66da52aef0]We became pregnant with our first child in October 1999. The pregnancy went along normally until Feb. 24, 2000, when during our routine prenatal ultrasound at 19 weeks, our baby was surprisingly diagnosed with a congenital diaphragmatic hernia. The doctors at the IWK Health Center in Halifax, N.S told us that there was a 50/50 chance of survival. An amniocentesis was performed to rule out any chromosomal abnormalities, and our results were normal. From that point on we had regular ultrasounds usually every 2-3 weeks. The doctors were concerned that because the heart was moved to the right side of the chest, there was the possibility that the major vessels to the heart would become too distended and a blockage would occur causing the baby's heart to fail. Fortunately, this did not occur. By all accounts, our baby was developing at a normal rate, and at 28 weeks I was given two steroid injections to help the baby's lungs develop.

On June 6, 2000, during a routine prenatal visit, my doctor discovered that my blood pressure was elevated. I was hospitalized overnight and then placed on bed rest at home. To our surprise, I went into premature labor on the morning of June 10, 2000. Owen was born vaginally at 4:41 p.m., six weeks early and had an initial Apgar score of 2. Owen weighed 6 pounds 2 ounces and was 19 inches long. He was immediately placed on an oscillating ventilator and kept "paralyzed" until a few days after the surgery. The doctors explained that the repair would take place when Owen was more stable, preferably moved to a conventional ventilator and off nitric oxide. Owen remained unstable and on the oscillating ventilator for several days. Finally his doctors decided to go ahead with the repair while still on the oscillating ventilator and nitric oxide. The conditions were not ideal, but they felt this was his best chance. Owen did very well during the surgery on June 16, 2000. The defect was a lot larger than expected, with his stomach, spleen, bowel, and his intestines herniated into his left chest cavity. A Gore-Tex patch was placed to repair the opening and replace the missing left side of his diaphragm. Owen remained very stable during the 3-hour surgery and actually came out of the surgery on less oxygen than he went in on. Two days later he was taken off the nitric oxide and moved to a conventional ventilator. He was extubated on July 4, 2000, and was started on small bottle feeds of breast milk the next day. Once his feedings increased substantially, he was allowed to try breastfeeding. Owen fed well, gained weight and was released from the special care nursery on July 17, 2000. We brought Owen home two days before his due date!

The next few months were uneventful until Dec. 24, 2000, when Owen developed a high fever and was very listless. All he had was a virus, but because of his past history, a chest x-ray was taken and a loop of bowel was seen in his left chest cavity. His "patch" had begun to separate from the chest wall, allowing a part of the bowel to reherniate. Luckily for Owen, this was discovered before he began to show any symptoms of a strangulated bowel that would have required emergency surgery. A second repair was performed on Dec. 28, 2000, and the surgery took almost six and half hours. Owen's smaller left lung did not tolerate the surgery well, and he came out of surgery in critical condition and back on a ventilator. Owen made another speedy recovery, was off the ventilator in 36 hrs, and came back home on Jan. 3, 2001.

Since his second surgery, Owen has been hospitalized several times for respiratory illnesses, and he has used both ventolin and pulmacort on and off since January. We are currently waiting for a consult with a respirologist to evaluate Owen's lung capacity and function. Also, shortly after his second surgery, Owen began to reflux regularly! He was given Zantac, and finally in June 2001, he was officially diagnosed with chronic severe gastroesophageal reflux after having a " barium swallow". He now takes 20mg of Losec regularly, and with some minor changes to his diet and schedule, his reflux has almost disappeared, except for the very occasional episode. Otherwise by all accounts, Owen seems to be developing normally. He is a very happy little boy, and we feel blessed and very lucky to have him! Hopefully the worst is behind him, and he will grow up without any memories of his early struggles, with only a few "cool" scars to remind him of how special he is!!


Written by Owen's mom, Natalie Mulak-MacPhee (Canada)
2001