The Mitchell family, Warkworth
At 20 weeks pregnant Mum Tiffany was told her baby had a diaphragmatic hernia, where the baby’s left side of the diaphragm isn’t formed, and was therefore unlikely to survive birth. Despite the odds, Tiffany and her husband Joel held onto the small hope that their baby would be ok.
For the remaining weeks of her pregnancy Tiffany was monitored weekly, where she also became terribly swollen as her baby was unable to swallow the amniotic fluid due to secondary complications with the baby’s digestive system.
Baby Eva was born on 13th September 2007 at National Women’s hospital in Auckland. From there she was rushed to the neo-natal intensive care unit where doctors inserted a tube into her airways as Eva was struggling to get enough oxygen. “We were unable to hold or see her for hours,” said Mum Tiffany “it was awful.”
The day after she was born, Tiffany and Joel along with their 3-year-old daughter Mela moved into Ronald McDonald House Auckland so they could be closer to Eva.
Eva was born with only half a diaphragm so there was nothing holding her vital organs in place in her chest cavity. As a result, Eva’s stomach was pushed up into her chest putting pressure on her heart and lungs and she was unable to feed.
Eva’s first five days were spent in a coma after she was moved to paediatric intensive care and while there her heart stopped. Preparing for the worst, Eva’s family began arriving to say their final goodbyes.
Doctors immediately placed Eva on full life support (a lung and heart bypass machine) for two weeks, during which time she suffered three strokes as the portal for the life support created a blood clot in her brain. Eva was taken off the lung and heart bypass machine and transferred onto a general life support machine. From here Eva began to stabilize and thankfully, because of where the strokes had occurred in her brain she didn’t suffer any severe brain damage.
At six weeks old Eva underwent her first operation to rebuild her diaphragm and reposition her organs. The surgery took 7 hours.
“I recall being with Eva as she awoke from the operation, her eyes were open but they were glazed over, it didn’t feel like she was our child at all,” says Tiffany.
As a result of her stroke, the left side of Eva’s body was unable to move. She remained in paediatric intensive care for 13 weeks. During all this time an anxious Mum and Dad were still unable to hold their daughter, now 4 months old.
Eva was later transferred to the hospital ward where she began rehabilitation as her stomach wasn’t functioning and as the stroke had also damaged her lungs, she had no voice. Eva remained on the ward for three weeks where she was finally allowed to go home to Warkworth for the first time.
While at home Eva contracted her first bout of pneumonia. The weeks that followed, Eva was knocked down by 7 bouts of pneumonia — a result of her chronic lung disease caused by her weakened lungs.
The constant attacks of pneumonia mean that Eva’s left lung is no longer functioning and she only has the use of her right, which has also been weakened.
Trips back and forth from Warkworth to Starship and Ronald McDonald House were frequent. A week at home would shortly turn into 2-3 weeks back in Auckland.
At 5 months old, Eva was having more trouble breathing so was admitted back into Starship. Doctors discovered that she had outgrown her new diaphragm and as a result all her organs were again up inside her chest cavity pushing against her heart and lungs.
Eva was taken back into theatre where doctors underwent the same surgical procedure. This followed with a 14 week stint in Starship while her stomach and bowel adjusted as they had been disrupted during the operation. Eva also needed to build up her lung capacity before she could return home.
Following this, the Mitchell family returned home. Over the coming months they were back and forth to Ronald McDonald House with Eva suffering another 4 bouts of pneumonia.
In late 2008, at 13 months old, Eva underwent her third diaphragm reconstruction as her body simply continues to outgrow the makeshift gauze diaphragms. Doctors are kept guessing as Eva’s condition reoccuring is so rare — in fact she is the only known surviving case in this country.
Eva’s stomach is still not yet able to function normally so she continues to be fed through a ‘mickey button’ in her stomach. She remains on oxygen 24 hours a day and also receives 3 doses of medication daily. Eva is undergoing physiotherapy and occupational therapy every day as well as seeing a speech and language therapist twice a week. Despite all of this, developmentally Eva is on target for her age although her speech and fitness still need a little work due to her damaged lung tissue.
Looking ahead, doctors have told Tiffany and Joel not to expect Eva to breathe on her own until she is at least 5 years old. Eva will continue to be fed through a tube until she puts on weight and builds up new lung tissue and gives her immune system a chance to strengthen. Once she is stronger and capable of breathing and eating on her own Eva will then begin the arduous journey of learning how to do these things for her self.
Eva, along with Mum and Dad and her sister Mela, age 3, have spent over 170 nights at Ronald McDonald House Auckland so far and there is still a long road ahead. For now the family is just enjoying each day together and hoping tomorrow will get a little easier for Eva.
“We are so grateful to Ronald McDonald House. Being able to stay together as a family and share the responsibility of caring for both Eva and Mela, has made this journey more bearable, it really is the house of love. The staff, the families we come to love who sadly understand the heartache you are experiencing and having a place to get away from it all is beyond words ” says Tiffany.
