By Hannah Caver, Staff Writer
TRUSSVILLE — Jared and Hannah Meads lost their twin boys to a rare genetic disorder, but the journey has brought them to a place where they have begun to use their own experiences to help others.
The Meads have been married since 2015, and from the very beginning, they knew they wanted to start a family. Jared is the assistant principal at Hewitt-Trussville Middle School, and Hannah works at Ascension St. Vincent’s Alabama.
“All I’ve ever wanted to be was a mom and a wife, but we wanted to have time to ourselves too, so about two years into our marriage is when we started trying to have kids,” Hannah said.
The conception of the boys was not easy. But, after an infertility journey of almost three years, lots of fertility treatments, and ultimately IVF, the Meads finally became pregnant with not one baby but two.
Hannah explained that her pregnancy was good, considering she was carrying twins. In addition, she didn’t experience any complications during birth. On August 4, 2020, the boys entered the world a month early, Tucker was born at 2:04 p.m., and Bennett followed shortly after at 2:06 p.m. They were admitted to the Newborn Intensive Care Unit (NICU); Hannah said the boys were having issues feeding and gaining weight, saying “It was a typical preemie thing” and raised no sense of alarm.
Tucker was in the NICU for three and half weeks, and Bennett was in the NICU for six weeks after getting an infection.
Hannah said her experience as a lactation consultant made her more aware that the boys weren’t feeding normally, but she kept hoping it was because the boys were a month early, and they would eventually get it.
“Once we got home with both boys,” Hannah said. “From the middle of September until the end of November, was kind of our ‘normal months,’ but they weren’t normal, either. They weren’t like typical newborn normal because they were still having feeding issues.”
Jared explained the boys were throwing up excessively, and they continued to struggle to eat. Neither could get the boys to take their bottles consistently, so the twins weren’t gaining weight.
Hannah grew concerned, noticing that the boys weren’t progressing as they had initially hoped. When the Meads informed the boys’ pediatrician, they were instructed to take the boys to see a gastrointestinal (GI) doctor at Children’s Hospital.
“We went and saw them, and basically they said if they didn’t gain well over the next week or so, we were going to have to get nasogastric tubes, which is a tube that goes through their nose into their stomach to be able to feed,” Hannah said. “So we were sad about that, praying that they wouldn’t have to go that route.”
Unfortunately, the boys were still not gaining well, and the week after Thanksgiving, the boys were hospitalized to receive nasogastric tubes (NG-Tubes). Hannah explained while in the hospital, the boys had lab work done, and the doctor noticed some abnormalities but didn’t seem worried, “the doctor thought it was probably just because they weren’t getting the nutrition they needed.”
Returning for a follow-up visit in January, the boys’ lab results were even more abnormal, and the Meads began to question what else was going on with their babies.
“The whole month of January was doing blood work and trying to figure out what else was going on,” Hannah said.
The Meads also met with a geneticist because while the boys were twins, they were fraternal, and Hannah had a hunch that it might be something genetic that was affecting them both.
“If they were identical, their DNA would be the same, so they would for sure have the same issues, but being fraternal, having the same things going on was too much of a coincidence to not be a genetic thing to me,” Hannah said.
Hannah explained it was a “God thing” because instead of waiting several months for their results, their primary doctor got them in to see a geneticist sooner. Then their doctor received the preliminary bloodwork results after only a week of waiting, and on February 8, 2021, they got the boys’ diagnosis of Congenital Disorders of Glycosylation (CDG).
CDG is a large group of rare genetic disorders that affect adding sugar building blocks, called glycans, to proteins in cells throughout the body. The addition of glycans to proteins is critical to the healthy function of cells. Bennett and Tucker were diagnosed with the most common type of CDG, type 1a or PMM2, with only around 900 documented cases worldwide, and very few of those cases are diagnosed in a set of twins.
Hannah explained that none of the doctors caring for the boys at Children’s had ever treated a patient with CDG.
“It was a learning process for all of us,” Hannah said. “It was definitely a journey.”
Jared said that they were told by Mayo Clinic that “basically our main job was to keep the boys alive for the first two years because 25 percent of CDG patients won’t make it past two years old”.
“I can remember going to work, and reality starting to set in how serious and detrimental this disease could be for our boys,” Jared said. “That we could potentially lose both of them.”
Since receiving the NG-Tubes, Tucker and Bennett had gained some weight, but they were still not gaining the weight they needed. Before receiving the diagnosis, the boys were set to be admitted into the hospital on February 10, 2021, to receive Gastrostomy Tubes (G-Tubes), feeding tubes surgically placed in their stomachs. On February 11, 2021, the boys underwent surgery to get their G-Tubes; however, it became a downhill struggle from there.
“After surgery, Bennett wasn’t himself for several weeks, and we kept saying something’s not right, he’s just not himself, but we couldn’t pinpoint anything,” Hannah said. “They were both in and out of the hospital several times throughout the month of February.”
Refusing to accept Bennett was okay, Hannah took him to the ER on March 1, 2021, and while sitting in the ER, Bennett began to experience seizures. He was admitted to the hospital. A week later, Tucker was also admitted because he was having a build-up of fluid in his stomach called ascites.
“It usually comes from liver failure, kidney dysfunction, and those kinds of issues,” Jared said. “Their’s was more CDG related. With CDG, anytime they have any sort of trauma or procedure, they can manifest this fluid. So they naturally have some liver and kidney dysfunction, but not necessarily a failure issue.”
Within 24 hours of admitting Tucker to the hospital, he also began experiencing seizures. Bennett was producing ascites as well, and after a week, the Meads were told he would never stop manifesting the fluid and that it would always be a struggle for Bennett.
“Within three hours of having that sit-down conversation with the doctors, Bennett didn’t produce any more fluid,” Hannah said. “He was producing a lot of fluid at that point, and he just stopped all of a sudden. I think all the doctors were very shocked and surprised. Bennett stayed in the hospital for another week, and then he went home and was doing great.”
While Tucker remained in the hospital, still having problems with ascites that seemed never to resolve, Bennett was home and continued to do well. Hannah explained from March until the end of May, his lab work was good, and he was responding well to therapy.
Unfortunately, Tucker would only come home for one weekend after he was admitted in March. Ultimately, he stayed in the hospital until August, when Tucker began to experience kidney failure. On August 10, 2021, while in Hannah’s arms, Tucker William Meads passed away from complications of CDG.
Sadly, toward the end of May, Bennett began to build up ascites fluid again. He was admitted back into the hospital, where he stayed until August when it became evident that he had been sicker than Tucker in the last weeks. While the Meads were saying goodbye to Tucker, Bennett unexpectedly took a turn for the worst and began to experience heart failure. Thirty hours after Tucker went to be with Jesus, on August 11, 2021, Bennett Andrew Meads, while in Jared’s arms, followed his brother to heaven due to complications of CDG.
The Meads do not blame God. Instead, they believe that there is a plan and that their babies are no longer suffering.
“I think it was a God thing,” Hannah said. “That was one of the things we were dreading the most, having to stay there with Bennett right down the hall from where Tucker had been. So, that was going to be hard, but they came into this world together and then went out together.”
Bennett and Tucker’s celebration of life was held together on August 14, 2021. Hannah and Jared continue to celebrate the boys, and while they experienced the unimaginable, they want the boys’ lives to be a testament to God.
“They were miracles before they were born; that’s why we have our hashtag Meads Miracles,” Hannah said. “I think that’s always been our hope is to honor them. But, most importantly, point it back to God. He’s not the one that gave them these diseases, and He’s not the one that took them away. Instead, He works everything out for good, and He’s going to use them and their lives for His glory.”
The Meads boys impacted many people in their short time. The doctors and nurses who cared for them saw the light that Tucker and Bennett were shining. They were the happiest babies. Hannah explained that in a place where God is not typically seen, the boys were miracles through it all.
“Even at their service, we had countless nurses and doctors in attendance for those boys,” Jared said. “We’ve seen quite a few of our nurses in the weeks past, and they all miss us, and we miss them.”
Jared said that even though they miss the boys more than words can ever express, they have found comfort in knowing that their boys don’t have to suffer anymore and they are now in the arms of Jesus.
Jared and Hannah had only been in their house together maybe twice throughout the boys’ hospital stay because they were juggling work life with hospital visits. Throughout the entire journey, Jared continued to work at Hewitt-Trussville Middle School. As a result, Jared and Hannah would rotate seeing the boys at the hospital and being at work. Jared explained that there were times when he would arrive at work and then five minutes later would have to rush to the hospital because the boys were not doing well.
“The two other principals that I work with, Jennifer Abney and Erin Piper, both have been so incredible through this process,” Jared said. “There’s no way we could have made it through without the support of the school, the school system, and everyone in our community.”
Jared went on to say that the community has been overwhelmingly supportive throughout the entire journey. Jared and Hannah want to specifically thank Nona Ruth’s, Cookie Dough Magic, Fitbody Bootcamp Trussville, Trussville City Schools, Cahaba Homestead Village, and the Troy Ellis Foundation, among others.
“So many people have said they don’t know what to say, and there’s nothing to say,” Jared said. “There are no words that can express this, but the prayers, the support, and the love that we have felt have carried us through everything. We realize it’s never going to go away. It’s something that we’re going to have to learn to live with and pray through.”
CDG Awareness Day is May 16, and the Meads have discussed hosting an annual fundraising event where the money raised would go to CDGcare.org to help fund research and provide for the families impacted by CDG.
Jared and Hannah Meads would like to thank the community for all they have done for them this past year. The community’s prayers and support are what push them forward.
“Our goal in all of this,” Jared said. “With the boys’ situation is to impact the kingdom, and I know they have. So we want to continue to do that, and our family, friends, and community have been a huge part of that.”