Steffini Vandever, 34, knew that something was terribly wrong shortly after the premature birth of her son, Jonah, three years ago. "The room went deadly quiet," she recalls, "as a trembling nurse brought my son for me to see. I asked the nurse if he had legs since all I could see was feet up by his face. She said, ‘Yes, but they’re not normal.’"

Over the next six weeks, Vandever was on an emotional roller coaster as the meaning of those words became clear. Jonah had backward knees and clubbed feet, with a missing baby toe on each foot; his hands were malformed, and he had no forehead. Tears became Vandever’s constant companion.

Other parents of newborn babies with congenital limb differences face similar emotions when they first realize that their child is different. It’s normal for a parent to grieve in such a situation. And this grieving process may take a long time to work through. Parents, nevertheless, need to go through the stages of shock, denial, anger, depression, acceptance, and hope. They may even experience feelings of guilt.

Liz Uchytil (pronounced you-ka-til), 54, vividly remembers when her daughter Theresa was born without a left hand more than 20 years ago. "I was very sad. I didn’t understand why it had happened. I hadn’t done anything to put my child at risk for a birth abnormality; however, I blamed myself." It took Liz a year to get over her grief. Then, she says, "I decided to move on and not dwell on what she did not have, but focus on what she did have!"

Mary Williams Clark, MD, puts to rest the notion that parents are responsible for their child’s congenital limb differences. "There was nothing which was under your control that you did or didn’t do that caused it," she says. "There are different causes for limb deficiencies, and we don’t know all of them. Some are genetic, but again, that’s something that is not your fault. If you took medication or were exposed to radiation or other teratogenic substances, remember that the limbs develop in the first four to seven weeks, usually before you know you are pregnant."

Communicating your feelings

Once a child is born with limb differences, communication is important for helping parents get through this difficult period. It may help them to discuss their feelings with loved ones, with other parents who have gone through a similar situation, or to get involved with a support group.

When Cheryl Leingang’s 12-year-old son Kurt was born in 1988, he was missing his right forearm and hand. Leingang, 45, now realizes that she worried about "silly" things at the time. Then she and her family were invited to a meeting of a support group called Limbs of Love. "We loved being with other parents and children who understood how we felt and the challenges that we were all facing," Leingang says. The family later helped establish a support group in Southern California called A Touch of Love. "We feel strongly that Kurt has benefited from knowing that he is not the only one on the planet who was born without a hand."

Maria Foster, 41, of San Dimas, California, also considers A Touch of Love a blessing. After her son Zach was born without a right arm or elbow, she had a very difficult time accepting it. "I used to cry and cry," she recalls. "Then I met Cheryl Leingang and other parents of limb- deficient children. I remember seeing everyone laughing and talking like nothing was wrong, and I remember being angry with them. How could they be happy when their child was handicapped? Then, somebody taught me that a baby is not an arm. Through Cheryl Leingang and the support group, I was able to see that everything would be all right and that I wasn’t alone, and neither was my child."

Providing for your child’s medical and psychological needs

Children with limb differences should be taken early to a child amputee center where they can be seen by various healthcare professionals, including a doctor, a nurse, a social worker, a psychologist, a dietician, a recreational therapist, a physical and/or occupational therapist, and maybe a prosthetist.

There is some debate about whether children with congenital limb differences should be fitted with prostheses early so that they can become accustomed to them and decide for themselves whether they want to continue using them or whether they should be allowed to adapt to their limb difference without prostheses. The debate seems to be more relevant for those with upper-limb differences. Lower-limb prostheses are often considered more necessary because of mobility issues.

Children with upper-limb differences can often learn to function quite well with their partial limbs, their feet, their toes, or their other arm. They can learn to hold objects under their chin, between their residual limb and chest or under their partial arms. Children are very good at adapting to their situation and often do not really need a prosthesis. In these cases, the prosthesis might really be more of an unnecessary cosmetic device than a functional one, especially since their residual limb can experience true sensations while a prosthesis cannot – a definite disadvantage. Conversely, having a cosmetic prosthesis might do wonders for the child’s emotional acceptance of his or her limb difference.

Sometimes, parents opt for prostheses for their children at an early age merely because they feel pressured to do so and think it is necessary. Later, they may find out that the prostheses were unnecessary and that their children perform better without them.

Since there is no right or wrong answer to the question of whether or not to use prostheses, parents and children with limb differences will have to determine what is best for their unique situation. It is important, however, that they realize that there are alternatives and that they not be pressured into doing anything that they might later regret.

Cheryl Leingang and her husband, Alan, opted to use a prosthesis for their son. They fitted him with a passive prosthesis when he was 9 months old and a myoelectric prosthesis when he was 13 months old. "We wanted to make sure Kurt received every opportunity that was available to him," she says. "He took to the artificial limb well and still uses a prosthesis today. We knew that if he got used to wearing the prosthesis at a young age he would have a better chance to take advantage of the modern technology that we prayed would exist in his future."

Knowledge is your best friend

Knowing what options are available is very important so that parents can make informed decisions.

Maria Foster considers the lack of information available to her when her son, Zach, was born 12 years ago as the most difficult aspect of her experience. "I had no options," she says. "Somebody wanted to put a hook on him. I wasn’t told about reading materials; I wasn’t referred to counseling; I wasn’t referred to support groups, and I wasn’t given information about my insurance and the coverage. I wasn’t told that my marriage could be saved if we knew what was happening to us. Nothing."

Her advice to parents: "Get as much information as you can get. Get on the telephone and call prosthetists. Not doctors. They don’t know everything. Get on the Internet. Talk to every social agency you can. Get counseling. Get into a support group. And most importantly, meet limb-deficient children."

Parents should look into any new treatments that might be available to help their child, but should not let themselves be rushed into anything they might later regret – especially if it is something irreversible.

Sometimes you might have to step on a few toes

Making the right decisions for one’s child might require insisting on something that traditional knowledge disagrees with.

Steffini Vandever was frightened because she had so little information about her son’s problems and because no one was able to give her satisfactory answers to her questions.

At five months, doctors constructed a forehead for the child and regularly put his legs in braces to try to straighten them; however, there was little improvement, and it looked as if Jonah would never walk.

The young mother decided to stop passively accepting other people’s opinions, including the doctors’, and began to educate herself. After consulting 43 doctors from around the country, Vandever made perhaps the most difficult decision of her life – the decision to ask the doctors to amputate her son’s legs.

At 18 months and at Steffini’s request, doctors amputated both of Jonah’s legs through the knees. Soon after, he was fitted with prostheses and quickly began to walk independently.

"Get educated on what your child has," Vandever encourages parents. "The more you know, the better you will be equipped to make the right decisions. The doctors won’t like it, but who cares? It’s your child, not theirs."

Parents might also feel that "experts" are judging their actions too harshly, making them do things that they don’t want to do, or intruding too much on their family’s privacy. They may have to say when they would prefer to talk to professionals and what parts of their lives are off limits. Even well meaning people can sometimes overstep their bounds.

Recognize your limitations, but be willing to make sacrifices

It is important for parents to realize that they cannot do everything for their child. Parents may have jobs, other children, and other things that require their time.

Parents must be aware of the potential for children to become jealous of their siblings with limb differences because they might be getting extra attention or better treatment. It is important that parents let the other children know that they are loved as well. Children with limb differences, like other children, will have days when they misbehave, and they should be disciplined just as the other children are.

Parents should not be afraid to say "no" to their child just because he or she has a limb difference. Parents should also realize that they are not just an extension of the medical team responsible for their child’s care. They are also parents and sometimes need to forget the medical aspects of their child’s life and just have fun with their child. Sometimes, they just need time alone or time to rest, Vandever says.

At other times, extreme sacrifices may be required to make the family function smoothly. Vandever, a single mother of three children, runs a children’s day-care business from her home so that she can spend more time with her own children. Before Jonah’s birth, Vandever was pursuing a law degree in criminal justice and was about to go into the police academy. "But when my son was born with his defects," she says, "I knew the best job to have was to stay at home and be his mommy." Each parent will face different obstacles and will have to make different kinds of sacrifices, according to the needs of his or her child.

Parents should know about the numerous government agencies, disability organizations, religious organizations, Shriners hospitals, and other organizations that are available to help them with any difficulties they might face.

As the child grows up

Parents of children born with limb differences are often surprised at how much their children can do.

Success stories usually start with the words, "We treated him just like anyone else." Children seem to do better when parents only give assistance when it is necessary and when parents don’t put limitations on them.

"As Theresa grew," says Liz Uchytil, "she was always doing things for herself. I worried that she would not be able to crawl because you need two hands and I was sure she was going to fall on her face. But, she taught herself how to crawl. Then, I worried that she wouldn’t be able to walk because you need two hands for balance, but she began walking earlier than her two older sisters." Theresa also surprised her mother when she became a baton twirler at age 6, and when she later learned how to type with speed and accuracy.

Leingang advises parents of children with limb differences to watch for "extraordinary abilities that God has blessed their children with." She has found many in her son, Kurt. "He plays soccer and baseball really well," she says. "When he was 9, he became a member of the prestigious All American Boys Choir. He currently plays the cornet in his junior high concert band and jazz band. I remember a year ago when we took the instrument that my husband had used as a child to a local music shop. We asked them to ‘spiff ’ it up. The owner of the shop said he was surprised Kurt had chosen to play the cornet because he had ‘never heard of a left-handed trumpet player.’ Kurt didn’t even blink. He just looked up at the man and said, ‘Well, now you have!’"

Difficult situations for your child

Two problems those with limb differences sometimes experience are staring and teasing. Parents should, thus, prepare themselves and their children for such situations.

Maria Foster describes her experiences. "When Zach was a baby, people (children and adults) would reach up and pull up his shirt to see his arm. Children in the park would chase him to grab his arm. I’d be screaming at people in supermarkets and parks to protect him."

Cheryl Leingang’s son Kurt had an older brother and sister, Kyle and Kendra, to help him. "They often answered questions for him from inquisitive children when we would go to the park," Leingang recalls. "He learned from them how to quickly dismiss it and just play along like everyone else."

Terry Haffner, a well-known public speaker and artist, was born without arms and with only partial legs. Sometimes when he was not able to wear his prosthetic arms, some of the neighbor-hood boys would tease him, saying, "Show us your muscle." Having a few best friends who accepted him fully made a world of difference to him, he recalls.

Parents can help prevent or dilute these problems by letting their child meet other children with limb differences, by explaining to their child that most children get teased about something, or by telling their child about their own experiences of being teased.

Dating and romance

Dating and romance also bring up numerous issues for children with limb differences.

Jan Garrett, JD, a successful disability rights attorney, was born with no arms and only partial thighs. She chose early in life not to wear prostheses – a decision that was respected by her parents.

"I wondered if I would ever find romantic love," Garrett recalls. "In high school, I never dated. It was not until I completed college that I had my first long-term romantic relationship. My first two serious romantic relationships demonstrated how immature and inexperienced I was in selecting an appropriate partner. But even though those relationships ended badly, they demonstrated that men could be attracted to me, something that was a new concept altogether."

Garrett ultimately met Dan Garrett, the man who would become her husband. "The relation-ship Dan and I share is solidly based on true love," she says. "But it is also based on mutual physical attraction. I know Dan loves me with my disability, not in spite of it."

Love and encouragement

It’s clear that many children born with limb differences go on to live happy, fulfilling lives, and most parents realize that their children’s limb differences do not have to hold them back. Terry Haffner, Jan Garrett and Theresa Uchytil – who ultimately grew up to become Miss Iowa in the 2000 Miss America Pageant, a world champion baton twirler and a program manager at Gateway Computers – are wonder-ful examples of how far those with limb differences can go.

Mary Williams Clark, MD, sums it up quite well. "Let the children know you love them just the way they are," she says. "The most important factor influencing the eventual outcome for your child as she or he grows up is not the kind of prosthesis, not the kind of surgery, if any, not even how early he or she was seen by an experienced team, or even the extent of your child’s physical differences - it’s your attitude toward the situation. If you can see all your child’s abilities, see her as capable, emphasize all the things he can do - if you can look at them with or without a prosthesis, in or out of the bathtub - if you can consider them normal children who happen to have their differences, that is the picture of themselves they will grow up with. Love them, challenge them, applaud them and they will develop the self-esteem and self-confidence they need."

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