My Health Experience: Baby steps against all odds
Despite being told their baby would not survive, the Miley family are not giving up
Our baby Jude was born a perfectly healthy, happy baby on July 16th, 2011, despite being nine weeks premature. He was kept in hospital for only five weeks and he pretty much thrived when we brought him home.
However, when he was about five or six months old, Jude started to develop what seemed to be one virus after the other and stopped putting on weight. As a public health nurse myself, I was concerned and I kept bringing him back to his public health nurse. On one particular occasion, our GP thought he might have croup and advised us to bring him to Our Lady’s Children’s Hospital, Crumlin, if we noticed any deterioration.
That night, I noticed his breathing was laboured and his respiratory rate was quite high. We decided to bring Jude into Crumlin where they did a chest X-ray. It showed that his diaphragm was pushing up his lung on the right side and squeezing it to a third of its size, which was why his breathing was affected.
Scheduled for surgery
Jude had a disorder called eventration of the diaphragm. He was admitted for further tests and scheduled for surgery, which happened on January 24th, 2012, and, to our huge relief, all went well. After two days in ICU, he was brought back on to the ward on January 26th.
I knew something was wrong all that day. He was making weird noises and crying. I kept calling the doctors and nurses. His stats dropped and his heart stopped; he suffered a cardiac arrest. It took the doctors more than 50 minutes to resuscitate him and, during this time, he was deprived of vital oxygen to his brain which meant he suffered catastrophic brain damage.
Jude had suffered post-surgery complications and was bleeding internally. They put him on an ECMO machine which bypassed his lungs and heart and he was brought down for surgery again. It was nearly midnight before we were able to see him. He was in surgery most of that time and, luckily, they had been able to locate the source of the bleed. It was horrific. He was in ICU for about eight days and he started having seizures. He had an MRI which showed he had a hypoxic brain injury. We were told it was unlikely he would survive.
How did we cope? I really don’t know. What happened still seems like a horrible nightmare. My husband, Greville, was a tower of strength. I fell to pieces but he found incredible strength from somewhere. Our families and friends were unbelievable; they did not leave our sides. The priest who married us, Fr Vincent Twomey, was a huge support and the ICU staff were so caring.