Happy Heartiversary, Tilly June!

August 18 marks the one-year post heart transplant for Tilly

By Terry Borders, JPI

Her parents, Amanda and Josh Best, knew that Tilly June Best was a miracle when she received a life-saving heart transplant at just 9 weeks old; however, they gained a new and even deeper appreciation a few weeks later.

A few weeks after her transplant, Tilly had to have another surgery due to an infection in her chest. Surgeons had to open her small body back up and “wash out” the infection.

“While in recovery, the nurse told us what a miracle she was,” Amanda said, “She was very excited that Tilly was able to get the heart and said that Dr. Godown really advocates for transplant for people with Down Syndrome.”

This was when the family first discovered that Tilly was actually the first infant with Down Syndrome (DS) to receive a heart transplant at Vanderbilt.

“I googled statistics of transplant in people with DS after the nurse told us and that is how I found that Dr. Justin Godown, one of Tilly’s transplant team doctors, had written a study published in the Journal of the American Heart Association just a month prior to Tilly’s birth, which advocated that Down Syndrome should not be a deterrent to children receiving a heart transplant,” Amanda said.

She further said, “When I thanked Dr. Godown for his advocacy and for his (and the transplant team’s) care for Tilly and told him I had read the article, he just smiled and said ‘that was good timing wasn’t it.’”

Unfortunately, transplant for people with Down Syndrome has not always been accepted and still is not in some areas.

“We are very blessed that Tilly was able to receive a new heart and especially that now, a year later, it is continuing to function ‘beautifully,’ according to her transplant team,” Amanda added.

The Bests found out when Amanda was just 11 weeks pregnant that the baby she was carrying was a girl who would most likely have Down Syndrome, which started a series of appointments and tests with specialists.

Early on, they were told that most babies with DS have heart defects as well. When a sonogram showed markers for DS and a congenital heart defect (CHD), they were referred to Vanderbilt. At 22 weeks, they were told she would most likely require a transplant. She had an unbalanced AVSD – a common valve was committed more to the right (unbalanced) and she had no walls separating the chambers of her heart. She had moderate to severe regurgitation and pulmonary stenosis.

“We were devastated, overwhelmed, shocked and in tears immediately,” Amanda shared, “I felt guilt almost immediately that it meant a child would have to die to be able to give Tilly the heart she needed.”

Despite that, she said, “God gave us peace throughout though. I am a worrier and get anxious easily. I had times where I expected to be worried sick or anxious, but I prayed for peace and God gave it to me.”

Tilly was born on June 14, 2022.

Two days later, her parents received confirmation that surgery was not an option and that their daughter would definitely require a heart transplant.

“In the beginning, she looked and seemed healthier, so it was hard to reconcile the idea that she needed a heart transplant,” Amanda said.

On July 1st, her siblings, Lynnley and Micah, now ages 5 and 3, respectively, as well as her grandparents, Carolyn Best, and David and Terry Borders, met Tilly for the first time. It wasn’t until July 8th that Tilly met the requirements to be listed as a 1a, highest priority, on the heart transplant list.

“The challenge of our family being separated during Tilly’s extensive hospital stay was overwhelming,” her father Josh Best said.

“With covid restrictions at the hospital, only Amanda and I could be in the hospital room unless special permission was granted,” Josh said. “We began our journey with leaving our 2 and 4 year olds with Amanda’s parents. After several weeks of having to say goodbye to them, and seeing the heartbreak in their eyes when they realized Mommy and Daddy were leaving for another 4 to 5 day stretch, we decided that this was not best for our other children.”

Tilly’s parents were initially staying at the Hospitality House near the hospital, which Josh explained is a great resource for families of patients, but not ideal long term for a family with preschoolers. Additionally, one of them needed to parent their other kids while the other stayed at the hospital with Tilly.

“By this time, we knew that Tilly would be required to stay in Nashville for some weeks post hospital discharge, so we began looking for an alternative that would be more family friendly,” Josh said, “We were blessed to find a condo owned by some Barren County residents that we were able to rent.”

Tilly received her new heart on August 18, 2022.

She was initially discharged to join her family in the Nashville condo on October 4th and, eventually, the entire family returned home to Glasgow on October 20th.

As with all transplant patients, Tilly is immune compromised, so a cold can, and has, resulted in brief returns to Vanderbilt for her. She continues to require some oxygen 24/7, but the plans are to eventually wean her off. Although she took bottles prior to surgery, she has been almost strictly fed via feeding tube post surgery. They are working on helping her regain interest in eating.

On August 3rd, Tilly had a “routine” cardiac catheter to check her heart functionality and check the tissue for signs of rejection. According to her parents, the tissue looked healthy and all valves were working as they should.

“She is currently doing wonderfully!” Amanda Best said. “After the heart cath, her doctors said ‘her heart and heart function looks beautiful! Couldn’t ask for better.’”

While at Vanderbilt on August 3rd, the Bests gave the transplant team a letter for the donor’s family, which will be given to Tennessee Donor Services who will contact the family and ask them if they would like to receive the letter.

“They can accept or decline. We will never know. The only way we’ll know is if they decide to contact us back,” Best said, “We pray they will at least accept the letter and know where their child’s heart went and how it is giving life to our beautiful baby girl. Words will always fall short and are just that – words – but I would like to think that knowing may offer some comfort.”

In addition to the blessing of Tilly herself, the Bests shared that the support of family, friends, and even strangers, has been such a supportive and heartwarming part of the past 14 months.

“We have been so blessed to have an army of family and friends to pray with us and for us and follow along on Tilly’s journey,” Amanda shared.

“We used the Facebook group “Love for Tilly” to post prayer requests and updates. We sometimes couldn’t keep up with all the supportive texts, calls and messages we received, so it was a great way to stay connected. Knowing people were praying for us and with us was such a comfort and blessing. There are currently 814 followers consisting of family, people we know, and quite a few we don’t know. We see people out in public all the time who ask about Tilly, especially friends and co-workers. If you are one of the people who have been praying for Tilly, we thank you!”