A Dream Within Reach: Balancing Parenthood and Muscle Disease

Balancing parenthood and neuromuscular disease is not just possible — many dedicated moms and dads who live that reality every day say having kids is the best decision they've ever made

Article Highlights:
  • This article explores the experiences of some people with muscle disease who have chosen to become parents — and why they say it's the best decision they've ever made.
  • Learn more about resources pertaining to pregnancy, genetic testing and financial considerations.
  • Read one woman's story about her journey to parenthood via adoption.
by Cheryl Alkon on July 7, 2014 - 9:23am

Quest Summer 2014

Matthew Martin and Amanda Hall have more than a few things in common. They’re roughly the same age — Martin is 28; Hall is 30. They both call the state of Texas home — Martin in Rowlett; Hall in Glenrose. Then there’s the fact that each lives with a neuromuscular disease — Martin was diagnosed with Duchenne muscular dystrophy (DMD) at the age of 8; Hall with congenital myopathy in her early 20s.

But the similarities don’t end there. Martin and Hall, despite the physical limitations associated with their respective diseases, share a primary passion that requires a high degree of dedication: They are parents.

And in that regard they’re not alone. With advances in medical care enabling longer, healthier lives for adults with neuromuscular diseases, an increasing number of these individuals are entering the world of parenthood.   

Martin, for one, applauds this trend: “I have read that some people think that when you have a condition like I do, it’s not fair to have children,” says the proud father of a 5-month-old baby boy. His advice: “Don’t let your disability hold you back from the things you desire to have in life. If you want to have kids, you should.” 

Similar determination marked Hall’s approach to motherhood. Growing up, before being accurately diagnosed, she was told she would not be able to carry a child. But, she recalls, “I knew, better than anyone else, about what I could or couldn’t do.”

Indeed, Hall eventually became pregnant not long after she and her husband, Stuart, began trying to conceive a few years ago. Today, the couple’s daughter recently celebrated her second birthday.

Matthew Martin and his wife adapt their parenting approach based on both his physical ability and his 5-month-old son's changing needs.

“I have been extremely fortunate,” adds Hall, who serves as board vice president for Camp Craig Allen, a camp facility for adults and children with physical disabilities. “Going into this, no one knew how this would go, but I had an awesome pregnancy.” 

While Hall and Martin are both supportive of prospective parents with neuromuscular diseases starting families, just as they have, each stresses that doing so should not be taken lightly. 

The question of kids

Deciding whether to have children is a personal decision. It’s a decision that some people know instinctively is right — or not — for them, while others ponder and deliberate at length on the subject. Having a neuromuscular disease may be a significant additional factor when considering having children. Then again, it may not be.

The bottom line for those with a neuromuscular disease in particular is this: “It’s hard to be a parent, but if you’re prepared to do it, you can do it,” says Robert McMichael, 60, a neurologist and the medical director of the MDA clinic housed within Neurology Associates of Arlington, Texas. 

McMichael’s perspective is personal as well as professional, since he is the father of two adult children in their 20s and has lived with muscle disease nearly his entire life; he was diagnosed with Bethlem myopathy, a subtype of limb-girdle muscular dystrophy (LGMD). 

“The biggest considerations are if you are able to care for your children and, if your children are at risk for the disease, are you prepared to accept that risk?” McMichael says.

For L. Vance Taylor and his wife, Casey, having children was always a high priority, despite Taylor’s diagnosis of LGMD at age 7. He has used a wheelchair since the sixth grade. “Any time anyone is looking at parenthood, they’re going to have some self-doubt,” says Taylor, 36, a security environment consultant and motivational speaker who lives in Alexandria, Va., with Casey and their two daughters.

“But we felt like just because I’m in a wheelchair doesn’t mean I can’t be a great dad,” Taylor adds, echoing the sentiments of Martin and Hall.

Amanda Hall had been told she could not carry a baby, but she conceived and delivered her daughter, now age 2, without any problems.

Similarly, Eric Kolb, 42, of Hannover, Germany, points out that his facioscapulohumeral muscular dystrophy (FSHD) is just one aspect of many that are relevant to his parenting. Father to two daughters, a 12-year-old and a 3-year-old, Kolb is a former performing artist currently finishing his Ph.D. in psychology at Cappella University in Germany. “I am able to live my life fully with this disease, and I can show my children that,” he says.

Communication is key

As individuals with neuromuscular disease weigh their options on the topic of parenthood, it is important that they talk things over to better understand exactly how their health and relationships will be affected, thrive and change with a new child in the family. 

“Perhaps the most important thing to do is to have a partner, family member, friend, physician or someone with whom the prospective parent can think things through with and make a decision,” says Marie J. Ritzo, a clinical social worker with Children’s National Medical Center in Washington, D.C. Discussing what each partner’s role will be can help pave the way for making things easier once a child is here.

“Be realistic about the roles and expectations,” adds Taylor. “My wife knew that the physical tasks were going to fall on her shoulders. We talked about that because it’s important that you both have clear expectations. I never did the diaper changes, but I assisted with feedings and was always physically close with my children as infants and held them in my arms.”

Prospective parents should consult their physicians about any related health issues that may arise for moms during a pregnancy or for the child after he or she is born. They also should seek referrals to counselors, therapists and medical specialists as needed, McMichael notes. For instance, any cardiac or respiratory issues may necessitate additional care and treatment plans, and if a pregnancy is deemed high-risk, consulting an expert in the field of maternal-fetal medicine is the best course of action (see “Pregnancy: What You Should Know,” above,  for more).

Lastly, any prospective parent living with a neuromuscular disease who is not already registered with his or her local MDA office should do so. Through its vast network of local offices and clinics, MDA provides lifesaving resources — everything from medical expertise to support groups — for those living with muscle disease as well as their family members and caregivers.

For L. Vance Taylor and his wife, Casey, having children was always a priority.

Genetic considerations

MDA clinics also are a great resource for answering questions related to genetic testing, which is available to help parents understand the possibility of the child developing a neuromuscular disorder. For prospective parents, genetic testing “can make you much better informed about the diagnosis and the outlook,” says McMichael. 

But prenatal genetic testing certainly is not for everyone, and its results do not have to dictate how parents proceed. “Some people say if they do genetic testing, it will determine whether or not they terminate a pregnancy,” says Taylor. “For us, that was never an option. We were going to do whatever came down the pike.”

Not knowing, however, has caused grief for Kolb’s older daughter. Kolb’s first wife wanted to shield their child from her potential future health issues, so they never told her about the possibility of developing FSHD like her father. “She’s in sixth grade, and in school, she was starting to learn about genetics,” he says. “The teacher mentioned muscular dystrophy, and my daughter called me in a panic, saying, ‘I just learned in class that I can get this.’” Kolb picked his daughter up early from school that day, explained about his condition and helped her process and understand the significance of a potential future diagnosis.

For those who do opt to pursue prenatal genetic testing, like carrier screening, it often is reimbursed through insurance, but prospective parents should work with an appointed genetic counselor at their local MDA clinic to better understand the entire process (see “Genetic Testing and Family Planning” on page 29 for more.)

Parenting 101

Once individuals with neuromuscular disease weigh all of their options, decide to start a family and successfully bring a child into their lives, they officially enter parenthood, along with its rewards and challenges.

The parents featured in this story emphasize that there are indeed challenges at every step — the physical neediness of newborns, the rambunctious toddler years, the myriad issues of school-aged children, and the rigors of puberty and adolescence. 

To prepare for the physical and emotional demands of raising a child, Hall advises prospective parents to “know your body and do your research.” In other words, know your limitations and learn how to be a parent within your range of capabilities.

“Having a child really takes a lot out of my body as far as energy goes,” Hall continues. “I like to stay active and go, go, go, but a lot of that has been reined in.”

Likewise, to save energy, Martin adapts his parenting approach based on both his physical ability and his son’s changing needs. “My son continues to grow; I have to find new ways to hold him,” he says. 

Of course, for Martin, like most parents with or without disabilities, taking on such “challenges” with gusto is just part of being a parent, which offers its own reward. 

“I want to always connect with my son, no matter my limitations,” he says. “I will always make an effort to do that, no matter what it takes.”

As children grow, Hall adds, they also can learn how to initiate that parent-child connection. “I was surprised that my 2-year-old adapted to my needs. She crawls into my lap, and always wants to help throw something away,” Hall says. “It’s pretty amazing that someone that young can make concessions for what her mommy can or can’t do.”  

Mindy Henderson, 40, of Austin, Texas, always wanted children.

By itself, the fact that Henderson was diagnosed with spinal muscular atrophy (SMA) at just 15 months old did not rule out childbirth — numerous women with pediatric-onset SMA have carried safe pregnancies — but in Henderson’s case, her SMA along with other related medical issues rendered the possibility of her carrying a child to term unlikely.

Undaunted, she and her husband, Michael, chose to pursue adoption instead.

“We knew we wanted to adopt an older child, as a baby is so physically dependent on you, and all the responsibility would have fallen to Michael,” says Henderson, who works as a project manager for a software company. “It didn’t seem fair to me, and I knew I would have felt really left out to not be able to do that.”

Instead, the couple adopted a 5-year-old girl from China they found through an agency and “felt in [their] bones” was their daughter. The process was far from easy, though. In fact, their initial application was denied due to Henderson’s disability. “It was beyond heartbreaking,” she says. “The denial was really a question mark of whether I could be an effective parent — and I knew I could. I knew my strengths and what I could give a child.”

The couple appealed to the agency’s owner, who pushed the application through the initial denial, and, eventually, the Hendersons were approved. The whole process took 10 months, and the couple flew to China to meet and bring their daughter home to Texas. But the trip itself was challenging, too. “China is not an accessible place,” says Henderson, who has used a wheelchair for most of her life. “You don’t see a lot of ramps; you see a lot of stairs.”

But it was worth it to finally meet their daughter and welcome her to the family.

Today, their daughter is 13 and has developed wonderful compassion. “She is incredibly helpful — she’s learned along the way the things I need help with,” Henderson shares.

Having been raised early in life in a different culture, Henderson’s daughter has come to appreciate what makes her unique — as well as mom.

“She can understand people’s differences. She’s struggled some with being different, but that is something that we share that’s been a really beautiful part of our relationship.”

Be sure to read Amazing Grace to learn more about Mindy's adoption journey.

Women with a neuromuscular disease who are considering pregnancy may need to consult with a high-risk obstetrician in addition to working with their usual OB/GYN, notes Robert McMichael, a neurologist and medical director of the MDA clinic in Arlington, Texas. Some of these women may not have the muscle power to deliver vaginally, so they would need to be prepared for the possibility of delivery by Cesarean section. McMichael says, however, that “most of my patients in the neuromuscular population have no higher rate of C-sections than the general population does, which is about 25 percent.”

For more details on this topic, consult the past Quest feature package, Great Expectations: Pregnancy and Childbirth with Neuromuscular Disease. Find it and other related content by typing “pregnancy” in the search box at the top of the page.

What exactly is genetic testing? How does it work? What are its limitations? Will it be covered by insurance? Find answers to these questions and more by listening to the archived presentation MDA’s Genetic Counseling Webinar.

Once you’ve investigated genetic testing for yourself, schedule an appointment with a genetic counselor at your local MDA clinic to discuss any questions and learn more about your options. Go to mda.org/locate to find the clinic in your area.

According to the most recent statistics from the U.S. Department of Agriculture, the cost to raise a child to the age of 18 is $241,080 for the average middle-income couple. That estimate, believe it or not, does not even include college expenses — and it certainly does not cover any extra child care needs a parent living with a neuromuscular disease might have.

To help defray the cost of child care in particular, many parents and family advocates suggest looking to support systems and community networks at the state and local levels. 

To learn more about how to participate in such networks, consult your local MDA office about how to get started.

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