About 1,500 babies are born in the U.S. each year with upper limb differences, and about 750 have lower limb reductions, according to the Centers for Disease Control and Prevention.
So, it’s rare to meet a baby like Mark Menou and his parents, Elaine (Lainie) and Corey. A routine ultrasound showed that Mark would be born missing significant portions of his left leg, his left arm, and both hands.
Lainie, an Ob/Gyn resident at Parkland Hospital, and Corey, a pediatric dentist, had never met a child who looked like their son would. They weren’t sure what to expect, and they were eager to learn how to give their son the healthiest start in life.
UT Southwestern’s maternal-fetal medicine (MFM) team worked closely with the Menous to monitor Mark’s development throughout the pregnancy. As they awaited his arrival, Lainie and Corey started researching resources and gathering stories from parents whose children had similar limb differences.
Though information was limited, they found some invaluable resources for newborn care, what to expect as Mark grows, and how to help him thrive. They also found that there is an entire community across the country for people with limb differences. The Menous’ offered to share their story to help others whose parenting journey takes an unexpected turn.
‘I thought I was prepared for anything’
By Elaine Fleming, M.D.
For many women, the mid-pregnancy ultrasound is one of the most exciting parts of pregnancy. This anatomy scan is when they take measurements and sometimes can learn the sex of the baby.
I work with pregnant patients, so I thought I was prepared for anything. But when the sonographer said the MFM specialist wanted to review our scan, I started to get nervous.
Dr. Robyn Horsager-Boehrer told us the ultrasound showed one of our baby boy’s legs hadn’t developed, along with the bottom part of his left arm, his left hand, and several fingers on his right hand.
We were worried about what this could mean – would the baby survive, and was his brain developing? If he was otherwise healthy, what would his future be like living with limb differences?
Those answers would unfold throughout our pregnancy, with an amniocentesis, genetic testing, and more ultrasounds, but there were some things we couldn’t learn until he was born. Waiting for results was difficult, but necessary. It gave Mark’s body and brain an opportunity to grow, and it gave us time to adjust our expectations and prepare for our new parenthood adventure.
A really awesome day
At our 28-week check up, we were nervous about what his next ultrasound might show. His genetic testing had already come back normal, which was great news. But there were still a lot of unanswered questions.
The ultrasound confirmed Mark’s limb differences hadn’t changed. We were able to see he could move the limbs and digits he had. The sonographer was compassionate and spent a lot of time talking with us. She took the time to let us watch Mark move his leg and open and close his right hand. We identified one of his fingers as a thumb, which meant he’d likely be able to pick up and hold objects. And we saw Mark swallow and learned his tongue was intact. Aside from the limb differences, he was growing strong.
That was a big relief – it was a really awesome day. But until he was born, we couldn’t be sure Mark’s brain development was on pace. We’d have to be patient for 12 more weeks, and we used that time to bank resources that would help us take the best care of our little boy.
Finding support and getting excited
Neither Corey nor I had heard of limb differences like our son would have. While everyone on our medical team was wonderful, we found there weren’t many formal resources to help us understand what might have caused Mark’s condition and what to expect after he was born. I even looked through my enormous obstetrics textbook and couldn’t find anything!
So, we turned to a tried-and-true source of information – other parents and young people living with limb differences. We found several helpful YouTube videos of children with similar differences produced by a prosthetics company based in Orlando, Fla.
The videos showed kids with prosthetics playing soccer, riding bikes, and enjoying a full life. They were very comforting – we still tear up thinking about them.
Corey and I also connected with other parents in Facebook groups like the Lucky Fin Project to get an idea of how best to support Mark as he grows. Everyone was so generous with their stories and support. Knowing there are other families like ours made us even more excited to welcome Mark. The challenges ahead started to seem less overwhelming, and we felt a sense of community.
Soon after Mark was born, additional testing showed that his brain had developed perfectly. He cried, smiled, and ate like any other healthy baby – and the worry we’d managed for months was quickly replaced with day-to-day challenges likes diapers to change and meals to prepare.
Tips for new parents like us
Corey likes to remind me that every day has its own energy: We should use today’s for today and save tomorrow’s for tomorrow. Mark teaches me the same lesson. Some days are great, some days are hard. Some days we celebrate, and some days we cry. Some days Corey draws up plans for an accessible drum set, and other days we worry about Mark’s future.
I’ve learned it’s okay to be sad for him because his life will have challenges other children won’t have to deal with, but I have never been sad about him. Our son will have a wonderful life. We’ll teach him that everyone has differences. Some are invisible and unshared. Others, like his, are there for everyone to see.
Some other things we try to keep in mind:
- Be courageous: Take your child out to meet the world. Teach them how to respond to curious (or rude) peers without hiding their differences.
- Build independence: Teach your child to do for themselves, express themselves, and defend themselves.
- Don't blame yourself: Instead, be determined to help your child love themselves and grow confident.
- Give comfort and care: But learn to assist without doing everything for them.
- Have fun! Teach your child about joy, laughter, and wonder.
Mark will be fitted for his prosthetic leg as soon as he starts pulling himself up to stand. This will give him every opportunity to get accustomed to his accessories. We were interested to learn that, except for specific activities like bike riding, prosthetics for upper limb differences are not recommended. Mark will learn to use his limbs so efficiently they’ll be unnecessary. How cool is that?
We’re so excited to see Mark’s personality develop. I hope he starts to suck his thumb, though my dentist husband feels differently. But when we look at his little right hand, we know he’s absolutely perfect, just like he is.
A few closing thoughts
Mark, Lanie, and Corey’s story is unique, but there are many new parents and parents-to-be who face similar challenges. It is our great privilege to work with them to develop careful plans to produce successful outcomes.
More people are sharing their personal stories – in fact, the 2022 Gerber Baby contest winner, Isa, has limb differences in her right leg.
Becoming a parent is stressful and becoming a parent of a child with visible differences can be overwhelming. Our team of experts is here to help, no matter what your circumstances.
Lanie, Corey, and so many others are inspirational examples that differences don’t have to be limitations. With a skilled medical team, guts, and a lot of love, their family is entirely whole.