Little Delayna LouIda Schrock has spent less than six hours of her young life in her hometown, but after a miraculous medical journey, her parents are hoping to be able to bring their daughter home for the first time next month.
Delayna was born at 10:51 a.m. on June 30th at Scotland County Hospital in Memphis. At 7 lbs and 2 ounces and 20 inches in length the newborn looked healthy, but right away there were issues with raising her body temperature, a problem that led to her transfer to the University of Missouri Women’s and Children’s Hospital in Columbia.
“Initially we thought it was a bacterial infection that was causing the issue, so it was treated with antibiotics,” said her father William Schrock.
The prognosis changed rather rapidly as doctors diagnosed heart abnormalities. Delayna suffered from a genetic disorder that had produced an abnormally large heart.
“The way it was explained to us, her heart was nearly twice as big as it should have been, and all of the extra muscle was acting like scar tissue, which was compressing her heart and keeping it from pumping properly,” explained William.
After less than a week in Columbia, Delayna was on a helicopter being transported to St. Louis Children’s Hospital in St. Louis, part of the Barnes-Jewish Hospital, BJC Healthcare group in St. Louis. Once there, she began a medication treatment in hopes of facilitating increased natural heart activity. But after two weeks the process was stopped, and her condition began to gradually deteriorate, and on July 25th she was placed on the heart transplant list, awaiting a possible donor.
A United Network for Organ Sharing (UNOS) report stated that 33,610 organ transplants were performed in the US in 2016, and approximately 10% of those were heart transplants (3,191). A total of 292 organ transplants of any type were performed on children under the age of one, or less than 1% of all transplants.
“There were 130 heart transplants performed last year on patients under 1 year in age,” said Anne Paschke of UNOS. “On September 18th, there were 45 infants waiting for a heart transplant.”
She indicated that St. Louis Children’s Hospital performed four of the state’s seven infant heart transplants in 2016
There is just one infant on Missouri’s heart transplant waiting list according to Paschke.
With the average wait time six months, the situation grew dire over the next several weeks as little Delayna’s health continued to worsen. Ultimately surgery was required to install a ECMO mechanical heart pump apparatus to manually pump blood through the six-week-old’s body.
Two additional surgeries were required to remove blood clots and less than two weeks into the pump process, further complications developed. The blood thinner required to allow the pumps to work was causing internal bleeding in little Delayna. She had nine blood transfusions in one day, but ultimately the pump had to be removed.
“At that point, basically everything medically that could be done for her, had been done,” said William. “It was up to her at that point whether she was going to make it or not.”
Based on her deteriorating condition, Delayna was removed from the transplant list.
Removed from her last medical lifeline, the little girl showed her own strength. Her chest remained opened from the previous surgeries, and this may have ultimately helped save the little one, as it likely helped relieve some of the pressure from the internal bleeding and fluid build ups that were compressing her heart and limiting its pumping ability.
A week after being taken off the transplant list, Delayna had grown strong enough for a second chance.
On her 7-week birthday, her parents William and Dianne announced the good news.
“There have been many ups and downs but she is strong and by the grace of God is doing well enough that we could relist her as a heart transplant recipient today after being off for a week,” they shared with friends on Facebook. “We would like to say thanks for the continued support and prayers we have received. This journey would be impossible without it.”
Then the difficult wait began.
According to the Pediatric Cardiology Journal, “Expressed as a rate, children awaiting heart transplantation experience the single highest waiting list mortality compared with all other age groups and all other solid organs in transplant medicine.”
Finally the phone rang around midnight on August 26th. A heart had become available.
“We don’t know where the heart came from,” said William. “It is all done anonymously through the transplant system. The only way to describe it is humbling.”
Delayna went into surgery prep at 8:45 a.m. Finally at approximately 7:30 p.m. she was out of surgery.
“It was around 11 p.m. that night when we finally got to see her for the first time,” said William.
The next family visit proved to be even more miraculous.
“It was simply amazing how fast she came back,” said William. “Less than 24 hours after surgery, she looked better than she ever had.”
Looks were not deceiving. Delayna was rapidly improving with the new heart. She remained in the ICU for just three weeks before being returned to regular floor status at the hospital.
“For the first time we can put clothes on her,” Dianne shared with her friends. “We have no idea when we’ll get to go home, but we are hoping to be out of the hospital by Thanksgiving.”
Apparently Delayna is in a bigger hurry to see home for the first time.
William said the family could possibly be leaving the hospital as soon as next week, albeit if only to stay together at the nearby Ronald McDonald House, which has been home to Diane and William since the first week of the ordeal.
“It will be the first step,” he said. “We’ll get to give Delayna her medicines and take care of her feeding tubes on our own.”
If all goes well there, it could mean the family could be back in Memphis as soon as the middle of October.
For the first three to six months, the Schrocks will have to keep their miracle baby fairly isolated from the public.
“We’ve been told to avoid large gatherings, even church, for several months because her immune system will not be capable of fighting off much of anything for a while,” said William.
But considering William and Diane have been home a grand total of four or five times since June 30th, and only for a few hours each trip, the family will gladly accept the restrictions.
“We have had tremendous support and I’m sure there will be plenty of people who will want to come and see her, so it will be hard at first to limit visitors,” said William.
William said the employees at his wholesale business in Memphis have been able to keep operations running in his stead.
Even with Medicaid picking up the majority of the anticipated millions of dollars in medical bills, the community has come together to help support the young couple and their two children. Donations are being accepted by the Potter’s House Mennonite Chapel of Downing. Contact Pastor Darrin Shank at 660-216-1870 if you would like to contribute. A GoFundMe account is being established for online contributions and the address will be announced when it becomes active.