Houston doctors offer hope to family facing rare fetal condition
Houston - A couple from Mississippi temporarily relocated to Houston for the past three years to save their baby's life. He was diagnosed with a rare condition before he was even born. Doctors in his hometown gave them little hope that he'd survive; however, Houston doctors had a much more positive outlook!
Three-year-old Thomas Price is beyond cherished, not only by his parents but his entire medical team at the UT Health Houston Fetal Center. Macey was devastated to get alarming news during her routine 20-week appointment during pregnancy.
"I'll never forget the lady doing the ultrasound! She covered up my stomach and said, I've got to get the doctor! I panicked. I just knew something was wrong," explains Macey.
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She was referred to a doctor in neighboring Alabama. That's when she and her husband, Jonathan, got more terrifying news.
"That doctor did the same scan and diagnosed Thomas with bilateral multi-cystic kidneys, which means they are cystic and not functioning. She was very cold and told us that it was lethal and there was nothing that could be done," says Jonathan.
The Prices were encouraged to end the pregnancy, but they refused. That's when they were introduced to doctors at the UT Health Houston Fetal Center. They found out about a trial that was saving 85% of babies with this same condition, but it was several states away! They were appreciative of those odds, considering babies have not survived outside of the trial. They had to move quickly to pull it off!
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"We got the call from Texas, saying if you want the chance to be here, now is the deadline. So, we rushed home to get our daughter at daycare, took her to Macey's parents, drove all the way to Houston, but the bridge in Louisiana was on fire, and we had to take back roads. It took 13 hours and we arrived at two in the morning. She had to be in the clinic at 6:00 a.m. to test numerous tissues," explains Jonathan.
"The Prices were referred to us because they had a complication which was known to have a very poor prognosis and a situation with early renal failure. The absence of amniotic fluid results in a situation where the uterus doesn't expand, the baby doesn't have the fluid around it as normally would have during pregnancy," says Anthony Johnson, DO, maternal-fetal medicine physician with UTHealth Houston. He was more than ready to give their little Thomas a chance through a special trial. "It's called the RAFT trial. It's Renal Anhydramnios Fetal Therapy. There are 10 centers in North America that are participating in the trial right now. It's a process where once we've pretty much determined that the baby has renal failure, we do amnioinfusions. What we're going to do is put fluid into the sack using a needle, expand the sack, allow the baby to basically have a normal environment, if you will," says Dr. Johnson.
Macey underwent 16 amnioinfusions that helped protect Thomas until he was born. Her water broke at 33 weeks, but she was hospitalized and able to deliver their beloved Thomas at 35 weeks on June 7, 2021. The very next day, Thomas began dialysis. Doctors believed it was miraculous that he survived to that point! Thomas did though have many complications over the first few years of his life.
"Thomas ended up being paraplegic from a spinal stroke at two months old. They don't really know the cause for sure, so that was the toughest day honestly, but each day, he got stronger and stronger," says Jonathan.
Dr. Johnson does sound the warning that while the trial is saving lives, it's certainly experimental. Families typically go through their own trials and tribulations to get through it all.
"My statement that I say to everyone is when you're enrolling in this trial, you're climbing Mount Everest and getting past the amnioinfusions is Basecamp. You haven't even started up the hill yet," says Dr. Johnson.
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The Prices made it to the top of that mighty mountain when Thomas qualified to become the very first child in the trial to undergo a kidney transplant. He received a 20-year old's kidney from New Orleans on December 18, 2023, when he was two-years-old. Their heart aches for the person who lost their life, but they are beyond thankful for their generous and life-saving donation. They realize their situation could have been much different, if it wasn't for this grand gesture of a life gift. They even witnessed the other side of the situation at the hospital, which was heartbreaking for them.
"After Thomas' transplant, we saw a banner for Donate Life down the hall in one of the other rooms and we asked the nurses what that was about. They said that family was making the opposite decision than us for their child," says Jonathan, with tears in his eyes.
Thomas' parents are relieved that he's now doing so well and beyond thankful for their doctor who is leading the trial.
"This whole process was very intimidating at first, but now I think of Dr. Johnson like a father-figure. I love him so much and I can't thank him enough for everything that we've been through with him. It's been it's been a wild ride and he'll tell you we've been through some things, but I don't think I would pick any other doctor to be on our side," says a thankful Macey.
Now Thomas is heading into his terrific threes, with a fun sense of humor, saying "Dada", instead of "Momma", when his parents laughingly ask him to say "Momma". He also enjoys saying, "I love you." Thomas is now back home in Mississippi with his family and big sister, Tully, to enjoy his second chance at life.