Having Children After an ALS Diagnosis

by Miriam Davidson on Thu, 2010-07-01 14:38
Article Highlights:
  • People who receive an ALS diagnosis at a relatively young age may face the difficult decision of whether or not to have children.
  • While some couples in this situation decide not to, others who have had children after an ALS diagnosis say it was “the best decision we ever made.”
  • Experts advise couples considering having children after an ALS diagnosis to carefully weigh all aspects of their decision, from the type of ALS to finances to the ability and willingness of the caregiver.

Erin Worsham and her husband tried to have a baby for six years, with no luck. They had accepted they would never be parents. Then, in a twist of fate worthy of a novel, Worsham got pregnant the day after she was diagnosed with ALS.

When Worsham learned of her pregnancy, she was delighted. Her neurologist, however, was not. “Don’t you know you could be gone in a year?” he asked.

Erin Worsham and son Daniel, who was born nine months after Erin received a diagnosis of ALS in 1994.

Since ALS tends to strike later in life, few people face the difficult decision of whether or not to have children after a diagnosis of the disease. For those who do, there are many factors to consider, including the type of ALS, the willingness and ability of the family caregiver, financial considerations and the best interests of the child, among others. Some people in this situation decide not to have children; others, like Erin Worsham, are determined to.

Worsham, of Nashville, Tenn., went in search of a sympathetic doctor. She soon found an obstetrician who told her what she wanted to hear: “It doesn’t matter if you live five days, five months or five years, you’re going to be happy you had this child.” 

The second doctor was right. Now 51, Worsham has outlived all predictions, and her 15-year-old son Daniel has grown into a strapping young man.

Many issues to consider

Keith Gawrick, of Katy, Texas, had only been married about six months when he received an ALS diagnosis on January 1, 1999 — his 31st birthday.

“One of our first questions was how this would affect our plans to have a family,” Gawrick recalls. He and his wife were relieved to learn that he had the sporadic, and not the familial, form of the disease — meaning the chances of him passing ALS on to his children were slim to none — but they had other concerns as well.

Keith Gawrick, wife Yvette, and daughters Laura, Katherine and Sofia. Keith received an ALS diagnosis in 1999.

“We considered many different aspects of the illness,” Gawrick says. “How long would I be around, how would our young children deal with the progression, would they ever understand what happened to me? After much consideration and praying, we decided to enrich our lives with the joys of having children. Not wanting to give in to the fear of the illness, we went ahead and had our family.” The Gawricks now have three girls, ages 9, 8 and 16 months.

Gawrick says his kids keep him smiling, even though there are days when he struggles “with the reminders of not being able to be physically engaged” with them. One of the few good things about having ALS, he notes wryly, is being relieved of diaper duty.

“I share the joys that other parents experience, but I don’t know how long I will be around and this thought is always on my mind as I watch my children grow,” he says.

Weakened respiratory and abdominal muscles can pose some special risks for women with ALS during childbirth. But for the Worshams, Gawricks and other couples facing a life-threatening illness, having a child can be a way of ensuring a connection with the future.

“Just knowing I had sperm out there gave me a reason to live” is a sentiment some cancer patients have expressed to researchers in connection with freezing sperm prior to undergoing cancer treatment, says Patricia Hershberger, an assistant professor at the University of Illinois-Chicago College of Nursing, who studies young adult women with cancer and their decisions about egg freezing.

Brian Stanfield, of Tulsa, Okla., and his wife Janine took advantage of similar reproductive technology in their quest to have children. Like Gawrick, Stanfield received a diagnosis of sporadic ALS as a young newlywed. He and Janine decided to start a family right away, in order to give Brian as much time as possible with the kids before his ALS symptoms became too severe. After a year of trying to conceive naturally, the couple turned to in vitro fertilization (IVF).

Brian Stanfield, wife Janine, son Braden and daughter Cayla. Brian received an ALS diagnosis in 2003.

The IVF was successful. The Stanfields had a son and were able to freeze additional embryos. “This became an important issue when we were ready to try for a second child,” explains Janine Stanfield. “Brian was enrolled in a clinical drug trial. Since it was an experimental drug, there was little to no information regarding its possible effects on a fetus. We were able to use our frozen embryos and were blessed with a baby girl.”

The Stanfield children are now 5½ and 4, and Janine says the family has its share of struggles, particularly about how to involve an increasingly immobilized Brian in the children’s energetic, active lives. These same challenges also are faced by families who had children prior to an ALS diagnosis.  

“Brian wants to be that dad who teaches his son to play every sport and throws the kids around in the pool,” Janine says. “It breaks his heart when they yell for help and he can’t run to the rescue and scoop them up. We try to focus on all of the time he gets to spend with the kids and everything he CAN do with them, like video games, play with baby dolls and go to the zoo.

“The joy of watching the kids play, hearing their laughter and hearing them say, ‘I love you, Daddy!’ makes Brian smile every day,” Janine continues. “We are firm believers that having a positive attitude goes a long way with this disease and our children have added to that ‘positivity’ time and time again. Life has been beautiful with them in it, even with this dreaded ALS.”

Unappealing and problematic

For some couples, having a child when one person has an illness that’s likely to drastically shorten life isn’t appealing or turns out to be far more problematic than they had predicted.

Steven Albert, a professor in the Graduate School of Public Health at the University of Pittsburgh, studies health outcomes, decision making and quality of life in aging and chronic disease, including ALS.

He’s asked some younger couples with ALS about their childbearing decisions. In one case, he says, a couple in their mid-20s decided not to have children after the man received an ALS diagnosis, apparently because they wanted to devote undivided attention to each other during the limited time remaining for him.

“She said her goal in life now was to spend as much time as possible with him,” Albert recalls.

In another case, a couple went ahead with plans to have a child despite the husband’s ALS diagnosis and things did not go well, Albert says.

The woman ended up feeling that she had to “shield the child from the illness,” he recalls. “That was very hard on the patient. She was very uncomfortable having a little child exposed to a patient with ALS. She thought it would scar the child in some way, which probably is inappropriate, but that’s how she felt. She was not ready for this sort of thing. They ended up divorcing.”

Stories like this illustrate the need for couples to discuss all the ramifications of their decision before going ahead, says Karen Toennis, a nurse and MDA/ALS Clinic coordinator at Methodist Neurological Institute in Houston. Toennis not only counsels couples in this situation; she herself has faced it.

ALS made bearable

Couples considering having children after an ALS diagnosis should thoroughly discuss their decision, experts say.

Toennis’ husband received an ALS diagnosis at age 37, when they’d been married barely two years. She calls their choice to have a child “the best decision we ever made,” because being a father gave her husband so much joy. “He said having our son made living with ALS bearable.”

Toennis took the opposite approach of the woman who felt she had to shield her child from the disease.

“Kids need to know the truth, but a simple truth,” she says. “I told [our son] Joe, ‘Daddy’s arms and legs don’t work, but he can understand every word you’re saying and he loves to feel your touch.’ My husband couldn’t move a muscle, but our son didn’t care. He adored his dad.”

Toennis’ husband stayed playful and focused his energy on their child. “When he went on BiPAP [a ventilator], we joked that he was ‘Spaceman Daddy.’ He had an eyegaze computer, and he used it to go shopping for birthday and Christmas presents, to plan parties and family vacations, and to organize our son’s Boy Scout activities. He was as involved as he could be.”

Toennis did shield her son in one way, however. “I didn’t ask Joe to do much caretaking,” she says. “I wanted him to enjoy his dad.”

Toennis’ husband passed away in 2006, when their son was 12. She says Joe of course misses his father, but he’s adjusted well. As Toennis points out, they had a good relationship, and Joe got to spend more time with his dad than a lot of kids with fathers who are healthy but absent.

“I tell young couples in the clinic who are considering this that they need to have good support to help take the burden off the caregiver,” Toennis advises. She also points out that people who get ALS at a young age tend to live longer and do better than those who are older when receiving a diagnosis. And for some couples  — such as the Worshams, Gawricks and Stanfields — having a child may give a person with ALS incentive to live.

“Everyone goes into having kids not knowing what the future holds,” Toennis says. “In our case, we appreciated every moment together, because we knew we had a limited amount of time.”

Miriam Davidson
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