- Molly, @the_heartful_homemaker on TikTok, has documented her pregnancy since learning her baby would be born with Beckwith-Wiedemann Syndrome (BWS)
- BWS is an overgrowth syndrome, which leads infants to be born considerably larger than usual and to continue to grow and gain weight at an unusual rate during childhood
- Molly tells PEOPLE about how she and husband Ryan prepared themselves and their family for son Samuel’s arrival
A mom of four is adjusting to life with her baby boy and his unique medical needs.
Molly, who goes by @the_heartful_homemaker on TikTok, was expecting her fourth baby when her OB-GYN informed her of “some abnormalities” at her 20-week ultrasound.
“Nothing was clear enough to make a diagnosis at that point,” she tells PEOPLE, noting doctors informed her that her baby had high weight, enlarged kidneys and his tongue protruding from his mouth.
“We were given the diagnosis of Beckwith-Wiedemann Syndrome (BWS) at about 30 weeks into the pregnancy by a maternal-fetal doctor. Later, we went to Children’s Mercy in Kansas City to further confirm the diagnosis,” she says.
Beckwith-Wiedemann Syndrome is an overgrowth syndrome that affects an estimated 1 in 11,000 newborns. Babies with BWS are born considerably larger than average and continue to grow at an accelerated rate through the age of 8.
Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from juicy celebrity news to compelling human interest stories.
Molly and her husband Ryan started to educate themselves on what to expect for their baby boy. She found out that she might need a cesarean section, depending on her baby’s birth weight. She also was told he would need time in the neonatal intensive care unit “to stabilize his electrolytes and blood sugar levels, ensure he could feed on his own and to ensure there were no breathing issues related to his tongue.”
“Along with our visit at Children’s Mercy in Kansas City, the online resources from Children’s Mercy of Philadelphia (CHOP) were very useful in understanding what to expect. We were given a very good picture of what to expect at the time of birth and for the rest of his childhood,” she explains.
After welcoming her baby boy, they would need to do quarterly cancer screenings due to the increased risk of liver and kidney cancer. Those screenings will continue until Samuel is around 8 years old.
“We will likely need to have his tongue evaluated for a possible tongue reduction surgery,” she adds, noting there are “less serious things” that indicate their son, Samuel, was born with BWS.
They also prepared their family for the changes to come. “Our three older kids range from 5 to 9 years old. We kept them very involved in the pregnancy from early on as it’s a great learning experience,” she says.
“Once we had the diagnosis, we spent a lot of time explaining the disorder in terms that they could each understand. We also took a lot of time to have candid and real conversations about the emotions and feelings we were going through as parents. It’s good for children to see their parents work through difficult things.”
Armed with all that information, Molly decided to “start taking it much easier.”
“The risk of preterm labor was about 50/50. I knew if I overexerted myself, I would increase that chance,” she says. “With how large our baby was in utero, my body was tricked into thinking it was farther along in the pregnancy than I actually was.”
Thankfully, she found her labor and delivery experience to be “the easiest compared to my first three.”
“I had a great peace over me throughout the entire thing. I know now that it was God’s peace and he blessed me with an easy and smooth labor. I had a lot of fears as I approached my due date that my labor would be traumatic and painful because I was already in such pain due to the size of our baby,” she says.
“When I went in to deliver, I was already well over half way progressed. I remember feeling like I was in labor, but I wasn’t a part of it, and I kept asking my husband, ‘Is this really happening?’ I was barely in any pain, even during the contractions,” Molly reveals.
She then had her epidural and got some rest. When she woke up, it was time.
“When the doctor came in to see how I was progressing, we were all very surprised to see that our baby was well on his way! We quickly got everything ready and set up, and in less than a minute, I pushed out our 10 lb., 10 oz. baby boy.”
Despite the fact that he was a large baby, he was still three weeks premature. As a result, Molly “was only able to see him for a moment before they took him to the NICU.”
“It would be five hours later that I finally got to see him again,” she notes. “That was incredibly hard for us and a very different experience compared to our other babies.”
“Thankfully, he was only there for five days. The NICU stay was very difficult, as the NICU at our hospital is not set up to accommodate family,” she explains.
“Though it was a draining experience, our experience was much shorter than other BWS families we know of,” she acknowledges.
“The bright spot is that we had a couple of really good nurses that cared for our baby boy. We could tell that they genuinely loved their job and our baby. It’s a difficult thing to leave your child in the care of a stranger, but when we saw how these nurses were caring for him, it made it much easier.”
Molly has had a “surprisingly easy” time with recovery, both physically and mentally, while continuing to manage her family of six with her husband.
“I struggled with postpartum depression after my third baby, so we are watching for the signs of that this time around. So far, though, I’m doing great. Our baby is a good sleeper and I’m getting adequate rest,” she says.
“My oldest daughter is almost 9 and she is an incredible help to me! She offers to hold the baby and feed him bottles if I’m busy doing something else or if I just need a mental break,” the proud mom says. “My husband works 12-hour shifts, sometimes for days or even weeks at a time. So my daughter is a massive help and she is a big reason I’m doing so well.”
Molly also credits her little ones for being “sympathetic and understanding” of their baby brother and his needs.
“Once we came home from the hospital without our baby boy, we had even more conversations about how we felt as we experienced even deeper and more intense emotions. Children are sensitive to the emotions of their parents, so we explored all these emotions with our children and talked them out,” she says.
The kids were also “so excited to finally meet their new little brother.”
“It was such a special moment. Each sibling has a different role that they have assumed on their own. They are intensely curious about everything going on with their brother and ask a lot of questions we would never even think about,” she says.
Molly and her husband have the support of their family, as well as others. “We try to simply serve each other and prioritize our marriage. Some of our favorite ways of doing that are morning Bible studies, praying with and for each other, and date nights — even though they take place at home right now,” she says.
“We have been blessed with a good support group. My parents, who live nearby, have been great with watching the kids for all the doctor appointments and the hospital stay. Our church family has also been a blessing with meals and just checking in to make sure we were doing okay.”
Looking ahead, the couple will continue tending to their son’s unique medical needs, though he’s on the right track so far.
“The primary concerns, at this point, are his tongue and the disposition to cancer. Thankfully, he feeds very well. He can breastfeed and bottlefeed, which isn’t possible for some BWS babies,” she explains.
“We are currently researching experienced doctors who can safely perform a tongue reduction surgery. Once we find one, we will take him in for an evaluation, which will likely involve a sleep study,” she explains. “He does tend to snore and will momentarily stop breathing at times, like he has sleep apnea. The only other difference will be the quarterly cancer screenings, and hopefully, we will never find cancer. Aside from that, he will just be a big boy that eats a lot!”
Molly’s little boy is just 7 weeks old, but he’s already in 6- to 9-month outfits. “We weighed him on our scale a couple of days ago, and he’s already over 13 lbs. He will essentially be in a constant growth spurt until he’s eight years old.”
Going viral wasn’t something Molly anticipated when sharing her story on TikTok, which she originally joined “to have a creative outlet because that was something I longed to have as a stay-at-home mom.”
“It’s been a wonderful experience. Once I shared that first video explaining what BWS is and sharing our baby’s symptoms, the supportive, loving and caring comments came pouring in,” she says.
Molly’s videos have amassed thousands of views as people learn more about BWS and her family’s experience.
“Surprisingly enough, I have only received a handful of hateful comments. When I receive those, I simply block and delete them. There’s no point in trying to argue with hateful people through a screen because I won’t change their minds,” she shares.
“The rest of the comments have been so genuine and kind. BWS is a very rare syndrome that most people and even most doctors haven’t heard of, so I enjoy spreading awareness and connecting with other BWS parents.”
Molly hopes that by sharing her story with others, other families who receive a BWS diagnosis will know “it’s nothing to be afraid of.”
“When we received the first diagnosis, it was delivered to us in a way that made us believe we were about to receive devastating news,” she says.
“As parents, you assume the worst; we were thinking our baby wasn’t going to live. Once they told us the diagnosis and gave us the prognosis, we were so relieved! This disorder carries no shortening of life expectancy. There are no known physical or mental disabilities associated with this disorder.”
After the age of 8, it’s very likely that, like others born with BWS, their son will get to “live a completely normal life.”
“Are we saying this is easy and there’s no difficulty? No. But it was important to us to keep perspective that many parents in that same hospital at that same time were given much worse diagnoses than we were. With anything that can be difficult, this has been an opportunity for us to grow closer as a married couple and as a family.”
