Baby’s organs donated to save others

Legacy of Rylei Arcadia

Posted 1/6/19

Rylei Arcadia Diane Lovett lived for one short week, but the legacy she leaves will bless two families immediately, and could benefit generations to come.

This item is available in full to subscribers

Baby’s organs donated to save others

Legacy of Rylei Arcadia

Posted

Rylei Arcadia Diane Lovett lived for one short week, but the legacy she leaves will bless two families immediately, and could benefit generations to come.

Rylei Arcadia was born on Christmas Eve, Dec. 24, 2018, to Krysta Davis and Derek “D.J.” Lovett. She passed away on New Year’s Eve, Dec. 31, 2018.

The couple learned about halfway through the pregnancy their daughter had anencephaly, a condition where the brain doesn’t fully develop. When their doctor suggested they could carry the pregnancy to term and donate the baby’s organs to save others, they knew it was the right decision.

Davis and Lovett have been together since June 2017, after meeting at the Cleveland gas station where she works. His visits there became more and more frequent.

“He was in there every other day,” Davis said. “We kind of hit it off.”

Davis became pregnant a few months into their relationship, which she said was a shock because she has polycystic ovarian syndrome, a condition that makes it difficult for a woman to get pregnant. However, the pregnancy ended in miscarriage in September 2017.

Afterward, they decided they weren’t going to try to get pregnant again, but didn’t prevent it, either.

“And in April it happened,” Davis said of becoming pregnant with Rylei Arcadia. “At first everything went pretty great.”

As part of her prenatal care, Davis went to her doctor for a quad screen test. According to the Mayo Clinic, the quad screen is used to evaluate whether a pregnancy has an increased chance of being affected with certain conditions, such as Down syndrome or neural tube defects.

A week later, the test results showed Rylei Arcadia had a greater than 1 in 5 chance of a serious issue, so Davis made an appointment with a high-risk pregnancy doctor in Chattanooga.

Davis said they expected a diagnosis of spina bifida, a neural tube defect that occurs when a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the spine.

That is, until an ultrasound at 18 ½ weeks revealed a completely different diagnosis.

Davis said she has a bicornuate uterus, a condition where the uterus is shaped like a heart, so the nurse at the high-risk doctor’s office performed an ultrasound on Davis to check her progression. From the nurse’s demeanor, Davis got the feeling something was not quite right. The feeling was confirmed when the doctor came in to see her.

“When he came in, he spent a lot of time looking at (Rylei Arcadia’s) head,” Davis said, adding he told her, “This is one of the worst diagnoses I have to give. I’m sorry, but your baby has anencephaly.”

The doctor told Davis she could either end her pregnancy, since she was less than 20 weeks along, or proceed with the pregnancy. She left the doctor’s office in shock. When she got to the car, “everything kind of hit all at once.”

She called D.J. and her family with the news. She also set up an appointment the next day with her doctor in Cleveland for a second opinion. That ultrasound confirmed the anencephaly diagnosis. The doctor gave the same options as the high-risk doctor had done — but also gave one more: Carry the baby to term so she could be an organ donor.

Both of Rylei Arcadia’s parents are organ donors, with Davis noting she has been since she first got her driver’s license.

“That was the option that fit us perfect,” Davis said, adding she and Lovett immediately agreed that’s what they’d do. “We took a day to ourselves and let it process.”

Then they told their families and friends of the anencephaly diagnosis and their plans to continue with the pregnancy. Social media updates were given on the Facebook page “Rylei Arcadia: An Unexpected Journey.”

“I had so many people asking for updates on her while I was pregnant,” Davis said, explaining the development of the page.

Clarissa Tilley, a photographer, began documenting Rylei Arcadia’s journey by photographing Davis and Lovett. She later photographed the baby’s birth and her brief life.

Davis said their story “took off” when Tilley shared their photo album on Facebook.

“Within a couple of hours her page just exploded, and our page has exploded,” she said, adding "Rylei Arcadia: An Unexpected Journey" has more than 11,000 likes.

Davis said Tilley “has integrated herself into being part of our family just by being our photographer.”

“She’s just been amazing this whole time,” she added.

Part of Davis' prenatal planning turned to working with Tennessee Donor Services, preparing for the time when Rylei Arcadia would no longer be with them. She was told the baby had to weigh at least five pounds to be considered as a donor. When they got to the hospital for the delivery, they were told the weight threshold was six pounds.

“She was six pounds even,” Davis said. “And 19 inches long.”

At 40 weeks and two days gestation, Rylei Arcadia was born at Erlanger Medical Center in Chattanooga.

“We went in Friday to be induced Saturday, and she came on Monday,” Davis said.

“She came out face up — she came out stargazing.”

And smiling.

Davis said the baby’s brain stem was exposed. If she had been born face down, as most babies are, she might not have survived delivery. But survive she did, and in her own way thrived.

Davis said the doctors told her that after they cut the umbilical cord, the baby “may not be able to sustain life on her own.” For that reason, they waited 30 minutes before they clamped the cord. The baby’s godmother, Heather Moore, cut it.

“Everybody kind of expected her to pass in that moment,” Davis said.

But Rylei Arcadia kept breathing, much to everyone’s surprise. A nurse kept checking her vitals, but the baby was breathing on her own. The nurse finally put a pulse monitor on the baby and said to call her if there was any change. Six hours later, Rylei Arcadia had her first feeding of sugar water. The next day she was able to have formula.

Davis and Lovett managed to remain positive throughout their daughter’s short life. Davis said there would be plenty of time later to cry, but while her daughter was alive she focused on that.

Instead of going to the neonatal intensive care unit or the nursery, Davis’ daughter stayed with her in her hospital room. Because no one expected Rylei Arcadia to survive long beyond birth, there was not really a plan beyond preparing for the organ donation surgery. So Davis and Lovett had their baby girl with them at all times. Family and friends could stop by to meet the baby, as long as they were not sick and used hand sanitizer and other germ-fighting products.

“After two days they technically discharged me. She was still a patient there,” Davis said. Mom, dad and daughter moved out of Labor & Delivery to the Mother-Baby Unit. For the next five days, Davis hardly slept because she didn’t want to miss a moment with Rylei Arcadia.

“When I did sleep, she slept on my chest or right beside me on the bed,” she said.

During that time, the young parents cuddled and talked to their baby, and visited with family and friends who stopped by. Davis and Moore remarked on how Rylei Arcadia would smile broadly, but barely tolerated being dressed; she was not a fan of clothing, no matter how adorable the outfit.

As each day progressed, Davis and Lovett were amazed their daughter was still with them. On Rylei Arcadias’ final day, Davis said she knew the end of the journey was near because the baby’s oxygen level was dropping.

“Even then she was just a happy little baby,” Davis said. “She cried her last day, and I think it was her showing us she could cry.”

Lovett was holding Rylei Arcadia when she passed.

As they waited for Tennessee Donor Services, Davis said she thought about whether she really wanted to donate the baby’s organs. Then she got mad at herself for second-guessing because in this way Rylei Arcadia would be helping other babies.

After surgery, her parents were able to spend final moments with her. The surgeon brought Rylei Arcadia to Davis and Lovett, and said he wanted to meet them. He was moved by their amazing decision and gift.

“He said, ‘I can’t thank you enough,’” Davis said.

Rylei Arcadia’s heart valves will be used to help two children, and her lungs will be used for research into anencephaly. Davis said she was told the researcher had been waiting two years for such a donation.

The hospital staff made molds of the baby’s tiny hands and feet, as keepsakes for the parents. Tennessee Donor Services presented them with a medallion honoring Rylei Arcadia.

And, like the rest of Rylei Arcadia’s unexpected journey, her parents posted the news of her passing on social media.

But that is not the end of the baby girl’s story.

Davis said she got a Facebook message Friday night from a woman whose daughter is due in February, and the diagnosis is anencephaly. The woman lives in Texas and wanted to follow Davis and Lovett’s example for organ donation, but officials there are hesitant. Davis reached out to Tennessee Donor Services and asked that organization to reach out to their Texas counterparts with more information about Rylei Arcadia.

Another person she met through social media is expecting the birth of a son with anencephaly in March. Davis is sharing information with her, too.

“I’m able to be a support system for women … who are going through this,” she said.

In her interview, Davis was wearing a T-shirt promoting anencephaly awareness. Because of increased interest, another T-shirt order is being considered. If you’d like to order one, visit the Facebook page.

Davis said she received a call from Tennessee Donor Services last week to let her know of a reception in April, during National Donate Life Month.

“She offered to have us be the speakers,” Davis said, adding the event will allow them to share Rylei Arcadia’s story and to meet others who support organ donation.

“I’m just her advocate. I’m her words, but this is her story,” Davis said of her daughter. “All of my strength comes from that little girl.”

Davis has appeared to be calm and positive in interviews where she talks about her daughter and the family’s experience. She said she believes her composure comes from knowing about the anencephaly early on, and being able to prepare. Having an unexpected week with her daughter — when she was expecting only minutes or hours — also helped provide “actual closure.”

“We cry every day, but at the end of the day we got that week we weren’t promised, and that made all the difference,” Davis said.

Rylei Arcadia’s parents opted for cremation and had a private visitation ceremony.

Davis said Tilley set up a GoFundMe page (www.gofundme.com/Rylei-the-miracle-baby) prior to the baby’s passing, to help pay for her at-home care. Now, Davis says anyone who wants to withdraw their donation is welcome to do so. She added she and Lovett have not yet returned to work, so any remaining donations would be used to help pay living expenses.

While the decision to make the organ donations was difficult, Davis said knowing two other mothers will be able to bring their babies home is a comfort to her.

“She did this,” Davis said of Rylei Arcadia. “She is the one who amazed the world. This is her story.”

Comments

No comments on this story | Please log in to comment by clicking here
Please log in or register to add your comment

X

Print subscribers have FREE access to clevelandbanner.com by registering HERE

Non-subscribers have limited monthly access to local stories, but have options to subscribe to print, web or electronic editions by clicking HERE

We are sorry but you have reached the maximum number of free local stories for this month. If you have a website account here, please click HERE to log in for continued access.

If you are a print subscriber but do not have an account here, click HERE to create a website account to gain unlimited free access.

Non-subscribers may gain access by subscribing to any of our print or electronic subscriptions HERE