Many define the action of birthing a child with a limb deficiency as a loss. To parents in this situation, perhaps this definition is fitting – for a time. Healthy reactions include a feeling of loss accompanied by unanswerable questions, grief, sadness and more often than not – guilt.
As practitioners, you may not immediately meet these young patients, but spreading the word on resources and understanding this period of time from a parents’ perspective can help frame their worlds.
Jennifer Peterson, an Amputee Coalition of America (ACA) Parent Support Network peer visitor, knew at her 19-week ultrasound that her baby girl, Amber, would be born a right transradial amputee. Peterson was relieved to have the opportunity to prepare for the challenges ahead.
Patti Garofalo also knows a lot about the initial concerns felt by parents of congenital amputees. In addition to being the president of Helping Hands Foundation Inc., her daughter, Annie was born a left transradial amputee.
“We were expecting nothing out of the ordinary,” Garofalo explained about her pregnancy and delivery. “However, when we were thrown a curve ball, everything came to a screeching halt. We didn’t know what to think, what to do, how to act.”
Having been there, Garofalo understands the confusion and concern that this situation causes.
“Emotionally, it’s a roller coaster, because [you] want to be loving parents, while at the same time, [you] must come to terms with this unexpected loss.”
Either way – knowing beforehand or at birth – Colleen Coulter-O’Berry, PT, DPT, MS, PCS and team leader for the Limb Deficiency Program at Children’s Healthcare of Atlanta, explains that it is always a shock.
“It was a pretty overwhelming situation for me,” Peterson said. She thought, “now I have to go home and tell my husband, and then I have to call my parents and start telling all of my friends about it. How are they going to react, and how am I going to make them know that it’s going to be okay?”
Peterson is not alone in her reaction. Garofalo empathized and explained feelings of isolation and uncertainty. She also had an array of questions about Annie’s future.
Before new parents like Peterson and Garofalo can fill their new role, they have to consider their own emotional health in taking on these challenges.
Parents commonly experience the five stages of grief — denial, anger, bargaining, depression or sadness, and acceptance — as they work through their emotions following the birth of a child with a limb deficiency. But long before they work their way to acceptance, parents are swarmed with emotions including guilt.
Parents often feel guilt and search for answers where none can be found. They think back on each day of their pregnancy searching for the action that may have caused this to happen.
“Families who join our group with infants are usually dealing with the denial or guilt issues,” Garofalo said. “They ask if there was a reason given by the doctors for what happened or what they could have done to prevent it.”
Maureen Lyon, PhD, ABPP, a clinical psychologist at Children’s National Medical Center in Washington D.C. acknowledges the guilt commonly felt by parents.
“Guilt can be a big deal for some people. If the parents aren’t able to work that through, sometimes professional help … can really be useful,” she said. “If you believe that your child … has lost a limb or was born without a limb because of something you have done the guilt can be destructive. Rather, if parents treat themselves with compassion when misfortune strikes their child, this will be better for parents and their children.”
Lyon suggests proactively involving parents in the recovery process to avoid these overwhelming feelings.
“Often parents are engaged in helping their child to use a prosthesis,” Lyon said. “That gives them something they can do, which can overcome feelings of helplessness.”
Peterson agrees adding that having a constructive way to deal with parental anxiety is helpful in getting through the grieving process.
“They will move through the stages of grief more quickly and start accepting their new challenge,” she said. “They want to be great parents but are overwhelmed by anxiety or depression. We cannot be there for our children in a positive way if we have negative feelings … because of our own issues. Lessening our own anxieties is the first step.”
According to Coulter-O’Berry, the ideal scenario for moving forward revolves around early diagnosis, which allows for an immediate referral either during pregnancy or at birth.
“Those kids we keep in contact with every 6 to 8 weeks,” she said. “We get them seeing other families and monitor them.”
Depending on the level of limb loss, the staff at Children’s Healthcare of Atlanta makes the decision of when to intervene with therapy.
“Usually the therapy and prosthetic fitting are started early in infants with extremity limb loss because the baby needs to prop when playing in sitting, rolling and playing on belly,” Coulter-O’Berry told O&P Business News. For the lower extremity “it’s not until the child tries to pull to stand and becomes more upright when surgical and prosthetic treatments are considered.
Despite what little can be done physically following birth, Coulter-O’Berry stresses the importance of recommending the counsel of a Children’s or Shriner’s network.
“There’s not anything we’re going to do prosthetically, surgically or treatment-wise but we can meet and greet and we can take ownership in a positive way,” she said. “Then that hopelessness is gone. You’re not alone.”
Parental acceptance and working through the grief is vital for the health of both the parent and the child.
“I think the healthier the parent is in accepting it, the more accepting the child is going to be,” Garofalo said. “For a parent, one of the hardest things is not only dealing with their own emotions but worrying about their child’s emotions.”
A practitioner’s role
Practitioners and other allied health professionals can advance the emotional healing process by listening to parents’ concerns.
“Don’t discredit the parent,” Coulter-O’Berry advised. “Listen to them and know your limitations. If you have not seen a lot of kids … please refer them to centers that do.”
Coulter-O’Berry explains that even the most well-meaning, caring and dedicated practitioners might better serve their patients by sending them to a pediatric expert.
“You can be a local resource,” she said. “Coordinate with your pediatric centers and work with them. If you don’t have the networking resources of other families, it’s important to get them to a center that treats them.”
Lyon adds that being honest with families during the recovery and treatment process is imperative. Similarly she thinks this same open communication is important within the family circle.
While it may be scary for parents at first, remaining positive and as close to routine as possible will greatly impact the emotional health of parents and children.
“If you usually go for a walk in the park or they play on the jungle gym … be sure kids have that routine,” Lyon said. “That in itself is healing.”
“Redirect attention to get away from what isn’t there to what is there,” she said. “We are more than just our bodies. In our culture it’s hard to keep that in mind.”
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Jennifer Hoydicz is the managing editor of O&P Business News.