Rita's Story

“Rebel” Rita May Hughes was born on July 3, 2021 in the Special Delivery Unit at Children’s Hospital of Philadelphia (CHOP). It was confirmed prenatally that Rita had a severe hypoplastic aortic arch and small sided left structures of her heart due to the genetic disorder Turner Syndrome. In this random genetic mutation, females are born with only one X chromosome. Girls and women with Turner syndrome can have a variety of medical and developmental problems, including heart defects. It is estimated that 98% of Turner syndrome pregnancies end in miscarriage. Rita has been fighting to live since before she was even born and it is that rebel attitude that has gotten her through more than many adults can say they have overcome in a lifetime!

At 6 days old Rita had her first open-heart surgery, a Hybrid procedure, that we hoped would help to encourage the left side of her heart to grow. Her body soon told us that it wasn’t working, and on October 20, 2021, Rita was listed for a heart transplant. And so, the wait began. Then, right after the New Year, Rita’s heart began failing faster than she could wait and on January 7, 2022 through another open-heart procedure, Rita had a Berlin Heart or Ventricular Assist Device (VAD) placed to help to get her to transplant. About a month after the VAD was placed, on February 4, 2022 she had a trach placed to help her get stronger so she would be able to accept her perfect heart…and so the wait continued. When she was finally stable enough after her many procedures, she was able to meet her big brother Timmy for the first time at 8 months old. Then, finally, on the evening of May 4, 2022, we received the phone call that we had been waiting to get for 6 ½ long months, they had accepted a heart for Rita. 

After transplant wasn’t easy. Rita was on ecmo for 5 days, a month on dialysis for renal failure from being on bypass for too long during her transplant, and she fought through a number of different viruses and infections along the way. Rita fought most things in her own time and in her own way and after 577 days in-patient, on January 31, 2023 Rita May finally came home! In the past 2 ½ years since she has been home, Rita is thriving and has hit so many milestones that we weren’t sure she would get to experience. Walking, running, playing with her big brother, learning some sign-language, AND she was just recently decannulated!! With every new skill that she learns and every new memory we have the opportunity to make with her, we cannot help but first, thank her angel baby’s family for their selfless gift and, second, think about every other heart warrior and their family whose path we crossed in the 18 months when Rita was in-patient.

Our family is local to the Philadelphia area, and we (Mom and Dad) were fortunate enough to have the ability to continue working during much of Rita’s hospitalization. We have often said that we do not know how we would have made it through such a long hospital stay had we been in the situation that unfortunately so many of the families that we met at CHOP found themselves in. 

Parents of children who are critically ill and have been inpatient long-term are already stretched thin in every way possible. Many of the parents we met had the additional worry of trying to figure out how they were going to continue to pay their mortgage, make their car payments or pay school tuition because they had been out of work or lost their job. It is so unfair that so many times parents are forced to choose between those responsibilities or being at the bedside in the hospital with their sick child. Rocky’s House will give parents one less worry to have on their already overflowing plate of worries by providing financial assistance and supportive services with “every day, life” responsibilities happening outside of the hospital. To know that someone is in your corner, advocating for you and your family so that you can advocate for your critically ill child is a huge weight off of already very heavy shoulders. Rocky’s House is such a fitting way to honor RJ Lynn’s life. RJ’s legacy will not only live on through Rita and the other heart warriors whose lives that he affected, but the organization will keep advocating for future families with long-term in-patient children.