This is their story.
Lester and Betty are just two ordinary people from Pennsylvania. Lester is a roofer and Betty kept The Antique business running. Their favorite hobby was traveling throughout the Midwest and some western states in search for antiques. They were married for 19 years and no children, so travel was easy to do. Three weeks after spending a month in Texas in pursuit of antiques, they found out they were seven weeks pregnant! This was in the Spring of 2017.
It was a Miracle Pregnancy! A twenty week ultra sound told them exactly what they were praying for; all was well and it's a girl! They decided to keep this a secret for just a little while. As time went on their secret became a fun thing so they decided to keep it to themselves. So Betty started wearing a light jacket 24-7, and finally her friends wondered if she is having thyroid issues since she always seemed so cold and was gaining weight. This turned out to be the biggest joke of all between them and their friends. Finally at 32 weeks of pregnancy some friends were starting to catch on she might be pregnant.
A week later on November 30, Betty at 33 weeks went into pre-term labor. The hospital stopped the labor and upon further testing they found out what every parents dreads, the baby was diagnosed with Congential Diaphragmatic Hernia (CDH). This is a hole in her diaphragm which caused all her stomach organs to move into her chest. A series of tests in the Pittsburg hospital showed she only had 18% lung volume and unfortunately that is not enough to live on. Upon advised by the doctors, Betty was discharged after two weeks in the hospital and then went to stay in Family House so she could be close to the hospital.
At 36 weeks pregnant and getting tired of hearing "Your baby will die," Betty went on a Google search and found Doctor David Kays in St. Petersburg Florida, who was saving CDH babies. They called and left a message with a very kind lady by the name of Joy. Thirty minutes later Dr. Kays called them personally and talked to them for an hour and both Lester and Betty were blown away as this doctor knew what he was doing and gave them so much hope. But later that day when The Financial Department of Johns Hopkins all Children's Hospital refused to accept their Amish Insurance, they had to look elsewhere for a doctor.
Betty did some more Google search and found Children's Hospital of Philadelphia (CHOP) advertising the best CDH program. On December 22nd, Lester and Betty made the six hour drive to
Philadelphia, met with the doctors only to find out their baby had a 10% chance of survival. They went back to their hotel room feeling defeated. The following day, December 23rd labor pains started on and off and no one was willing to stop them a second time. On December 24th they woke up with a renewed determination to get to Florida.
An old friend whom they hadn't talked with in a while called to wish them "A Merry Christmas" and was appalled at their story. But an hour later after hanging up, their phone was ringing off the hook with people offering to help. At 2:PM on Christmas Eve the Financial Department called, saying they were willing to help in asking if it was possible for them to get a private insurance like Blue Cross? On Christmas Day at 3:PM, they got a call to say they are accepted due to the private insurance and the financial department would have a meeting with them on their special case. Being accepted was a special Christmas gift from Jesus.
On December 26th, being 37 weeks pregnant they left that dreaded hotel room and headed toward Florida, with Hope deep in their hearts, driving eighteen hours straight through. On December 28th they had a three hour consult with Dr. Kays, who gave them a 90% chance of survival, plus there was no need to redo tests.
On January 9 2018 Zoie Michelle was born and was on a ventilator within minutes.
At 15 hours old she was on a form of life support called ECMO.
At 34 hours old, she had her major four hour repair surgery.
She struggled to live but had a compassionate doctor whom the nurses texted 24 hours on her progress. He was never far away and very much "hands on".
At 11 days old she was off ECMO.
At 22 days old she was off the ventilator and on C-PAP Oxygen.
At six weeks old, she had another major Fundo Nissan Surgery for Acid Reflux because of a deformed Esophagus.
Discharged at three months old.
Zoie was born with 18% total lung volume, small side left heart, 97% of her left diaphragm was missing, which is now replaced with a GORE-TEX patch.
Zoie is now six months old and is doing very well. Without a doubt Zoie would not be alive today without the God given skills of Dr. Kays. He is saving the most severe cases of CDH with the lowest lung volume. He is by far the best and most compassionate and caring doctor and he saved a severe case with Zoie. He is known to do just that. He doesn't just repair these babies but gives them quality life by protecting the lungs and brains while on ECMO and the ventilator. Not many doctors can offer what Dr. Kays does.
Lester and Betty had to do their own searching for Dr. Kays. They personally know of other parents whose CDH babies died because they thought there was no other options, not knowing about Dr. Kays because no doctor or hospital would tell the parents there is hope for their baby in St Petersburg Florida with Dr. Kays' care.
Dr. Kays with Zoie
Zoie tonight at the Pinecraft Park, very much alert watching the squirrels.