Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
13 weeks into their first pregnancy, Sarah and Elliott Stephenson received news no parent expects to hear.
Their little boy Oliver was diagnosed with Gastroschisis, a birth defect of the abdomen wall. The muscles that make up this wall hadn’t formed properly and his intestines were outside of his body, protruding through a hole where his belly button should have been.
“It came as a complete shock,” said Sarah. “We were overjoyed to be expecting and so excited to see the first pictures of our little one. Nothing prepares you for the news that something is wrong with your baby.”
Sarah was referred to King Edward Memorial Hospital, where specialists could monitor the rest of her pregnancy carefully. The doctors outlined the process that would take place once Oliver was born. Because his intestines were not covered in a protective sac and were exposed to amniotic fluid, they had become irritated, causing them to swell.
“The doctors weren’t going to be able to push the bowels back through the hole immediately after he was born because they were too swollen,” explained Sarah. “They would have to be covered with a special bag and we would have to wait for the swelling to go down.”
After a long labour, Oliver was born by emergency caesarean section in February 2012. As had been discussed, a sterile bag was placed over Oliver’s exposed bowels to prevent infection and he was admitted to the Neonatal Intensive Care Unit at PMH. He was put on a ventilator to help him breathe.
Oliver’s intestines were not ready to handle breast milk immediately, due to the amount of irritation they had experienced in utero. He received all his essential nutrients and fluids through an intravenous line, giving his intestines time to recover. Gravity began the process of reinserting Oliver’s bowels back into his abdominal cavity. Due to the amount of bowel that had developed outside of his body, this process took a number of days.
Oliver remained on the ventilator, as the doctors had discovered a small hole in his oesophagus. Fluid was accumulating in the space around his lungs, causing further breathing problems. A drain was inserted to remove the fluid.
Seven days after his birth, Oliver’s bowels were completely back inside his body. Six days later, a temporary patch to close the hole in his abdomen was applied.
We still hadn’t had the chance to give Ollie a cuddle. Between the ventilator, chest drains and the sterile bag over his bowels, we weren’t allowed to pick him up and hold him. It was so difficult to watch him go through so much.
Sarah would have to wait for another week until she was able to give her tiny son the cuddle she had desperately craved.
“Ollie had low protein, magnesium and calcium levels and fluid overload that caused mini-seizures. The team had to monitor his brain activity and they gave him medication to improve his levels and get rid of some of the fluid. It was just more equipment that was attached to him, preventing us from holding him,” said Sarah sadly.
Nineteen long days after giving birth to Oliver, Sarah was finally able to hold her first born. The hole in his oesophagus had healed and the chest tubes were removed.
“It was the best feeling in the world!” exclaimed Sarah. “I didn’t want to let him go!”
At three weeks of age, Oliver was taken off the ventilator. Sarah and Elliott were so emotional to hear their son’s voice for the first time since he was born.
“I cried happy tears,” Sarah confessed. “It was the first skin to skin contact I’d had with Ollie and to hear his cry was overwhelming.”
For the next three weeks, Oliver got stronger and stronger. His bowels started operating well and his donor milk feeds increased each week. He had surgery to close the skin over the hole in his abdomen, with further surgery to take place to repair the muscle when he was older.
Finally, at six weeks old, Oliver was allowed to go home. He had transitioned from donor feeds to formula successfully and his bowels were working perfectly. There would be weekly check-ups and more surgery in the coming weeks, but it was time for him to graduate from the Neonatal Intensive Care Unit and start his life with Sarah and Elliott in their family home.
The Stephenson’s welcomed their second son, Eli, in December 2013 and Oliver was an extremely proud big brother. Two months later, Oliver celebrated his second birthday and got the best present of all, his very own belly button! The surgeons were able to complete the final closing of his abdomen.
Unfortunately, children with Gastrochisis can often have long term medical complications and Oliver suffered from a bowel obstruction when he was three. He spent five days at PMH after emergency surgery.
“We had to rush him to hospital as he was in extreme pain,” said Sarah. “The surgeon that did all of Ollie’s original operations was there to do the surgery, so we knew that he was in excellent hands.”
After everything that Oliver had been through, it was still a shock to Sarah when Oliver was diagnosed with pulmonary lymphangiectasia in 2016. Leaky lymph vessels in the lungs can cause a build-up of fluid in the chest cavity. The lungs can’t inflate fully, affecting Oliver’s ability to breathe, particularly when he is moving.
Ollie had an ongoing cough that he just couldn’t shake. We finally got an answer as to what was going on and he was admitted for IV antibiotics. Once he came home, we had to change his diet to a really low fat one to help stop the leak from his lymph vessels.
But Oliver proved himself to be a little fighter once again and started Kindy. He made friends quickly and thoroughly enjoyed being in the classroom.
Like many little kids, Oliver had surgery to have his tonsils and adenoids removed along with the insertion of grommets in his ears. He also had to have another operation to drain more fluid from around his lungs as it was impacting his ability to breathe.
“He couldn’t run around with his friends like he wanted to,” explained Sarah. “He doesn’t like some of the procedures that he has to have, but they are necessary so he can participate in all the activities he enjoys.”
Oliver is an active little boy. Despite all of his challenges, he enjoys playing with his friends and has joined the local rugby club. He loves playing Lego and hanging out with his little brother.
There’s always the fear of the unknown with Ollie’s condition. We don’t know if he’ll have further issues with his bowels or lungs. But the care we have received from the PMH staff is second to none. The NICU nurses got us through the hardest time of our lives and we will be forever grateful for the support they provided.
“Ollie is doing really well now, his lungs are clear and he’s growing big and strong. Ollie even wants to be a doctor when he grows up, so that he can fix kids like his doctors fixed him! We are very lucky to have such a great team of doctors and nurses.”
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