OUR DAUGHTER TAYLOR’S STORY BEGAN IN 1996. MY HUSBAND AND I WERE ELATED TO FIND OUT WE WERE EXPECTING. THE FIRST OBSTETRICIAN APPOINTMENTS WERE NORMAL AND ROUTINE. THEN, AT FIVE MONTHS, SOMETHING STRANGE APPEARED DURING AN ULTRASOUND…
Initially, the physician’s assistant told us not to worry. After what seemed like an eternity, she said it appeared our baby girl’s heart was slightly pushed to the left. She didn’t elaborate why or how this could happen, but we knew something was wrong. We were sent to the University of Kentucky Hospital for a high-risk OB appointment.
There we had another ultrasound, and they said it looked as if our baby had a mass on her lung. Some additional time in the womb would be needed to enhance her undefined condition. We were asked to return in two weeks for another ultrasound.
When we returned, the prognosis looked bleak. Our daughter was diagnosed with a condition called Congenital Diaphragmatic Hernia. The doctor explained that Taylor didn’t have a diaphragm on the right side, and most of her intestines—including her liver and bowel—were in her chest cavity. Taylor was given a zero percent chance to live. Her condition was severe; it appeared as if she had no lungs. We were given the option to abort, but we strongly declined.
We looked into an experimental procedure being done at the University of San Francisco, but they declined our request. Her condition was so severe that she could not be considered as a candidate. So we proceeded forward on what would be the longest few months of our lives. We had ultrasounds or appointments every other week. Each time, the doctors would explain to us that once Taylor’s umbilical cord was cut, life support from me would end, and we would have to let the natural course of events happen in our arms. As you can only imagine, my wish was that I could keep her safe and warm inside me forever.
The doctors decided to induce labor at 38 weeks. According to the ultrasound, she appeared to be a good size, and her heart was strong. Her daddy and I felt a small glimmer of hope, and we prayed for her healing.
December 20th came, and Taylor entered our world at 11:07 in the morning. It was the greatest – and scariest – day of our lives. We were in constant prayer and worried about what would happen next. A whole team of doctors was there for her arrival. Neonatologists whisked her away and immediately started working feverishly. After stabilizing her as much as they could, Taylor was taken to the NICU. She was placed on a ventilator and a heart and lung bypass machine called ECMO (Extracorpeal Membrane Oxygenation).
When we finally got to see her, there were so many tubes coming out of her that I was petrified to touch her. The machines were constantly beeping and chiming. The doctors said the next few hours were critical and her success would be determined by how hard she wanted to fight. After a couple of days, they witnessed her determination and decided to do reconstructive surgery on Christmas Eve. Once Taylor was out of the womb, they were able to do chest x-rays along with many other tests. She did have a left lung which they could not see while she was still inside me, but it was compromised because of the amount of intestines pressing on that side. She clearly was not out of the woods and wouldn’t be for a long time.
Th e day of surgery arrived. Taylor was so fragile she couldn’t even be moved to the operating room. They had to scrub down the whole NICU floor in preparation for her surgery. Visitors were not allowed in to see their own babies due to the cleaning process. We almost lost her numerous times during the surgery, but we never stopped praying. We had approximately 50 family members in the hospital chapel praying constantly. Finally, we were notified that Taylor was out of surgery.
When her daddy and I finally saw her, she had an incision more than half way across her stomach, but she was alive and beautiful to us. Eventually, she became strong enough to come off ECMO. Soon, the chest tubes came out and – little by little – our baby became tube-free. We brought Taylor home when she was 31 days old. The doctors predicted it would be six months to a year. It was hard to predict, but they also thought she would have some learning difficulties.
With her determination to live and the hard work from doctors (and us), she is now a thriving, beautiful 16-year old. There is so much more to Taylor’s story and not enough time to tell it. The important thing for us was to never give up on our child. The odds were stacked against her, but she wasn’t giving up. Our faith and family saw us all through it.
CDH affects 1600 babies in the United States every year, with a 50% mortality rate. It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth. The cause of Congenital Diaphragmatic Hernia is not known. There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida. More research funds are desperately needed and we are appealing to the United States government to help these babies.
The Congential Diaphragmatic Hernia Research Bill supports research funds for the severe birth defect, Congenital Diaphragmatic Hernia. Sponsored by Senator Jefferson Sessions (R.) Alabama. Please ask your Congressmen to support Senate Bill S.3396
Visit www.cherubs-cdh.org/bills to track the progress of this bill.
Kristy Hacker lives in Broadlands, VA with her husband of nearly 17 years and her two beautiful children. She’s been a stay-at-home mom for the last 15 years but recently started working as a substitute teacher in the Loudoun County public school system. She is passionate about providing a way for other families affected by CDH to connect. She can be reached at firstname.lastname@example.org.