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Posted on Jun 02,2016

“They told us there was nothing they could do and that his best chance was at All Children’s,” explains Crystal Ipe as her newborn lay, “literally dying right before us,” at a hospital several hours south of St. Petersburg. “We were told to have our family say their goodbyes because they didn’t think he would survive the trip,” She was distraught, but she and her husband Jon signed every paper necessary to ensure that the All Children’s specialty ambulance could take any measures needed to save Jon Wyatt’s life during the three-hour drive to All Children’s Hospital Johns Hopkins Medicine. They had hoped for a helicopter transport, but Wyatt’s conditions, which required an oscillator, didn’t allow for air travel.

What were those conditions exactly? At that point, nearly three weeks after his tumultuous birth, the family was still struggling to find out. Crystal herself, had spent nearly a week in the hospital after giving birth with preeclampsia – dangerously high blood pressure – until she returned to safe levels. “We didn’t have a clear, honest picture until we got to All Children’s,” she explains. “We had to stomp our feet a bit and I’m sure we were annoying, but we needed answers, and we got them.” Wyatt’s Dad, Jon adds: “We knew that we’d keep pushing until there was no push left.”

How it Began

“Wyatt – who was born at 28 weeks – had developed respiratory failure not responding to the usual therapies and required a higher level of care which resulted in him being transported to All Children’s. He developed severe lung disease which affected his heart function,” explain his nurse at All Children’s, Caren Smith.  Wyatt was tested for surfactant lung disease and congenital heart failure. Eventually he was diagnosed with pediatric pulmonary hypertension.

Normal ventilating procedures were not working for him and on more than one occasion, to everyone’s dismay, he nearly didn’t make it.

“He would look at us and talk to us with his eyes asking for our help, still on many occasions we all though he was going to die.” – Joana Machry, M.D.

“Wyatt remained on high ventilator support for several months,” explains neonatologist Joana Machry, M.D. “His lungs were severely damaged from the beginning and continued to worsen over time. Wyatt had frequent episodes of turning blue at minimal stimulation and he did not tolerate even having a bowel movement. The team taking care of him daily and overnight spent significant time at his bedside over many months trying different strategies to help him. Despite his challenging lung condition Wyatt was eager to live. Wyatt had an intact brain and all other systems were functioning well. He would look at us and talk to us with his eyes asking for our help, still on many occasions we all thought he was going to die.” 
 
Dr. Machry, who leads the Pulmonary Task Force, saw the need to present his case to determine formal input on how to improve his lung condition.

An Innovative But Risky Option

“Julia Krzyzewski, our respiratory therapist, suggested that we consider a different mode of ventilation thought to be beneficial to patients with severe BPD. The mode, called “Airway pressure release ventilation,” combines a high pressure for longer period of time to a low pressure of shorter duration,” Machry explains.  The issue – a big one – was that, while the procedure has been successful in adults, for a neonate, the risk was high.
 
“We put our faith in Julia and in the doctors,” recalls Jon. “She called people in Canada and all over the world to ask advice and she pulled it all together. It was our last hope. We knew that.

“Julia demonstrated on a simulation lung she had set up for us so we would know how it works,” Jon continues. “She explained that a lung is like a balloon, the more you blow it up and stretch it, the easier it gets each time to add air. We were given 110 percent of the information we needed. We were so involved and I wrote down every single thing I was told. Wyatt was still struggling too much and we knew we didn’t have any options. So we tried this and he thrived.

“Needless to say, I nominated Miss Julia for employee of the month,” he laughs. “The Neonatal Intensive Care Unit is amazing. We love those people. They work their hearts out. And mostly, they loved our son as we did. If we couldn’t be there, they called us every single time something happened and kept us informed.

“Even though we got a lot of bad news, Caren always tried to tell us something good about Wyatt,” Crystal remembers. “I am forever grateful for how she was with us and how much she loved our son. To me she's one of his angels.
 
“There's one nurse I will never, ever forget or ever be able to express how much she means to us – Lisa Allen. She took him on when no one else did, because his survival rate was only 4 percent. She never gave up on him but most of all, she loved him. She was his mom when I couldn't be there and I can't express enough how much she means to me.”

“Each and every member of our team taking care of him fought for his life every day.” – Dr. Joana Machry

Wyatt’s Future

“Wyatt remains ventilator dependent. The tubes he has (gastrostomy, tracheostomy) are necessary to support his life,” Machry concludes. “Whether he will be able to live without them is to be seen. We do not have all the answers now. Quality of life is very relative, he certainly has loving parents that fought for his life and were willing to take him home at any condition we could offer. All we did was to grant that desire. Each and every member of our team taking care of him fought for his life every day.”
 
Wyatt spent his first 348 days in the NICU. Crystal and Jon barely had him home for a week when a complication with one of the ventilator hoses nearly killed him and sent him ambulanced back to All Children’s in another emergency attempt to save his life. It worked.

He is currently back home and his devoted parents remain determined that Wyatt won’t spend another holiday in the hospital. His family is eternally grateful for the extraordinary measures taken at All Children’s to keep him alive against all odds. Certainly their own determination, love and care for their child played a significant role in the recent celebration of his first birthday. We can only imagine their birthday wish.


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