Enjoying Pregnancy with the Challenges of Limb Loss

The experience of pregnancy and the preparation of starting a family can and should be a joyful experience for a couple. Although there are some unique considerations for amputees, generally, there are no medical reasons related to the amputation that would prevent women from carrying a baby successfully throughout a pregnancy.

This article addresses concerns from three women who are amputees and have either given birth or are currently pregnant — and the issues two prosthetists encountered when treating pregnant patients.

Concerns before pregnancy

Before becoming pregnant, most of these women — whether they have a transfemoral, transtibial or high level amputation such as a hemipelvectomy or hip disarticulation — have some anxiety regarding their ability to carry the baby comfortably full-term while wearing prostheses.

Julie Honish-Carman, a left transfemoral amputee as a result of sarcoma 3 years ago, has two children — a 5-year-old and a 6-month-old.

“I did not worry about getting pregnant in relation to being an amputee,” said Honish-Carman. “I was mostly concerned about what would happen with the weight shift and if I would fit into my leg comfortably for the duration of the pregnancy.”

Honish-Carman was also concerned about feeling trapped, unable to get out to take her son to school if she could not, for some reason, wear her prosthesis one day. But due to weekly appointments with her prosthetist whereby adjustments were made to accommodate the weight shifts, Honish-Carman wore her C-Leg® until she arrived at the hospital on the day of her delivery.

Kevin Towers, CPO, and Benjamin Harder, CP, both from Prosthetic Orthotic Solutions in Marlton, N.J., believe that most women of childbearing age who want to bear children should not be prevented by prostheses. According to both prosthetists, pregnant amputees are often anxious to know whether they will be ambulatory throughout the pregnancy. If they have to go through the pregnancy with crutches, then they can’t use their hands. The women also worry about comfort and how long they will be able to wear the prostheses during pregnancy. Moreover, they want to know how long it will be until they will be ambulating after they deliver the child.

“We try to assure them that while the changes will be significant, with a bit of planning and routine follow-up care throughout the process, we can get them through seamlessly in most cases,” said Towers.

Considerations for care, for the most part, depend on the level of amputation.

A woman with a transtibial amputation is a fairly straightforward case, Towers said.

“There are not a lot of changes to be made other than adjustments in the prosthesis for weight gain.”

How to accommodate for the weight gain depends on the size of the residual limb, added Harder. There is not much weight gain in the first trimester. As the woman progresses through the pregnancy and becomes bigger, a larger socket is constructed.

Other issues

Elizabeth Rusher, a right transfemoral amputee from a congenital defect, has two daughters, a 4-year-old and a 15-month-old. Her concerns were whether the pregnancy would strain her back and if she would be able to carry the baby comfortably to full-term.

“During my first pregnancy, I was able to wear my leg until about the fifth month, which was no problem because I am adept with crutches,” she said. “The problem was when I would sit down, my socket was so high it interfered with my belly. That was the main reason I had to stop wearing the prosthesis.”

During the last 6 weeks of Rusher’s pregnancy, she developed severe edema in her sound leg. She tried to alleviate the edema by elevating her foot, stretching and drinking lots of water.

Socket designs and weight shifting

Elizabeth Rusher, her daughter Jane, and husband, Matt spend an afternoon in Point Pleasant, N.J. during her second pregnancy. Elizabeth was unable to wear her prosthesis late in the pregnancy.

According to Towers, in a pregnant transfemoral amputee, fluctuation in the volume in the residual limb changes each trimester. There is often a period where the residual limb will actually get smaller, so it its necessary to “snug up” the fit of the socket.

“It is important to make the socket material as dynamic as possible,” said Towers. “Many times the designs will be liner frame, meaning there is the ability to adjust the volume of the socket as they are going through the pregnancy.”

An extreme case — and this could pertain to any level of amputation — is performing a socket change, disconnecting the current socket and fitting a temporary socket to accommodate the great change in the residual limb, Towers said.

Another issue that applies to the transfemoral level amputee is how the weight of the body is carried over the prosthesis, causing an imbalance.

“Obviously, the weight is far forward,” Harder said. “Because of this, they tend to have a lot of hyperlordosis, so we accommodate that by flexing the socket and moving the prosthetic knee posteriorly.”

Towers and Harder help the pregnant amputee through the process, considering materials, componentry and the necessary alignment change based on individual needs.

Hemipelvectomy

Shelly Houser, a right hemipelvectomy as a result of an unknown genetic anomaly, is currently 30 weeks pregnant with her third child. Due to a neglectful and irresponsible gynecologist, her first pregnancy was fraught with complications resulting in the necessity for a cesarean section, a worsening of her scoliosis and a long recovery period. The baby was born premature. After this experience, she was not sure she wanted to have a second child, but due to appropriate medical care from another gynecologist, the second pregnancy went well. She was able to wear her prosthesis up until the eighth month and was back into her leg 2 weeks after the baby was born.

“I just gave up wearing my leg now, at 7 1/2 months,” said Houser. “I am seeing a chiropractor so that the scoliosis does not progress and I am taking care of my body by exercising and eating right. I am doing great. I have never let myself be limited by my disability.”

Houser was wearing the standard fiberglass bucket made for the hemipelvectomy patient that goes around the waist. She sits in it on the right side. The frame of the socket was trimmed back while the flexible inner socket was extended to make room for her growing abdomen.

“Eventually, there just was not any more room for my stomach, so I stopped wearing the prosthesis,” she said.

A Brief Description of Congenital Amputation Approximately one in 2,000 babies in the United States are born with all or part of a limb missing. This includes a missing portion of a finger or toe to the absence of all four extremities. In the 1960s, several pregnant women were prescribed tranquilizers containing the notorious drug thalidomide. The drug caused infants to be born with tiny, deformed limbs. Other events in recent history that left children with malformed or absent limbs were exposure to Agent Orange used in Vietnam, and radiation fallout during the Chernobyl disaster in Russia. Causes Most often, however, the cause of congenital amputation is unknown. It is the least common type of amputation. According to the March of Dimes, most birth defects have one or more genetic factors or one or more environmental factors. But pinpointing what these factors are in individual cases is extremely difficult, if not impossible at this time. It is during the first few weeks, or the first trimester, when a woman is sometimes unaware she is pregnant, that the fetus is most susceptible to substances that can cause birth defects. One reason for malformation or limb absence is tight amniotic bands that may constrict the developing fetus, preventing the limb from growing normally, if at all. Amniotic band syndrome occurs between one in 12,000 and one in 15,000 live births and the cause of the syndrome is unknown. If the problem is detected early, it may be possible to free the constricting bands via surgery, preserving the affected limbs. However, it is not a common procedure. For more information on amniotic band syndrome, read the story on page 30. Types The complete absence of a limb leaving a stump is called a transverse deficiency, or amelia. If a part of a limb is missing — for instance, the fibula — but the remaining leg is intact, it is called a longitudinal deficiency. If a mid-portion of the limb is missing, for example, when the hands or feet are attached to the trunk, this is known as phocomelia. An ultrasound may detect the absence of the missing limb in some fetuses, but not always. Prostheses A team of professionals including a pediatrician, orthopedist, psychiatrist or psychologist, prosthetist, social worker and occupational and physical therapist are often needed to treat the affected baby. Some clinicians believe it is best to fit the baby with a prosthesis early to prevent wasting of muscles and encourage normal development. Others, including parents and physicians, believe the child should be able to play and learn to do activities of daily living without a prosthesis. The rationale for the latter is so the child does not develop a negative self-image, believing that he or she is unfortunately missing something that needs replacement. Moreover, many children do not like to wear a prosthesis and are quite adept without one, compensating for their disability in extraordinarily resourceful ways. Prevention There is no known way to prevent congenital amputations. However, preventing some birth defects in general is possible. Smoking, drinking alcohol and taking recreational and even some prescription drugs can possibly increase congenital birth defects. Continuous exposure to certain chemicals can also be dangerous for the growing fetus and pregnant mother. Studies have shown that a healthy diet, a complete vitamin and mineral supplement and possibly folic acid may reduce the chances of birth defects. For More Information: Congenital amputation. Available at: http://www.healthofchildren.com/C/Congenital-Amputation.html. Accessed Dec. 12, 2005.

After the baby arrives

Labor was not a problem for any of these women. But sometimes, the period after the birth can be the most challenging time. At first, Honish-Carman could not wear her prosthesis and had a difficult time caring for a newborn and a 4-year old at the same time.

“I was like a hermit for the first 2 weeks,” she said. “I pretty much stayed in the bedroom where the baby was and I brought things to him. I was not able to carry him at all. My parents helped out quite a bit.”

After 10 days, Honish-Carman got back into her prosthesis and that, she said, changed everything.

“I felt free again,” she said.

Currently, her baby is 19 pounds and it is a challenge for her to carry the baby. Her alignment has returned to a more upright posture, but the baby is heavy and cannot hold onto her yet with his legs.

Another problem Honish-Carman has is that her pregnancy socket is now too large. Because of her post-pregnancy weight loss, she worries the prosthesis is not as safe as it should be while carrying the baby.

“I have about 11 pads in my socket to take up the space,” she said. “It is like trying to walk well in a shoe that is too big.”

Appropriate prostheses

When amputees become pregnant, the size of the residual limb often changes. Other times, the prosthesis is unable to be worn when the belly begins to swell. The solution is using crutches for the remainder of the pregnancy.

Towers and Harder are fairly progressive with their component selection. Almost all their pregnant patients are young, active, high-level community ambulators, so they select componentry that falls into that category. They use anything from a C-Leg, to a Rheo Knee™, to a high quality hydraulic unit. According to Towers, a C-Leg offers some additional benefits for someone carrying a baby in terms of safety. It does real time stance phase decisions without the wearer having to think about controlling those decisions with the residual limb.

Rusher added that using her C-Leg during her second pregnancy made walking much safer because the computerized prosthesis could be adjusted for weight gain and forward shifting of weight.

“I was always afraid of falling with my previous prosthesis because there was no way to adjust for my increasing weight,” she said.

As far as sockets, Towers and Harder use an ischial containment socket; proprietary name, Freedom™ Socket.

“The materials can be fenestrated and the frame and liner are separate entities so we can make changes readily with the trim lines on the frame to accommodate the abdomen and even the way they are sitting in the prosthesis,” Harder said.

Wary Practitioners

Both Harder and Towers believe there are some practitioners who do not believe a woman can wear her prosthesis throughout pregnancy.

“I have the impression that they underestimate the ability of a woman to adapt through the process and underestimate their own abilities to take them through that process,” said Harder.

Some practitioners use the rigid socket design for their pregnant patients, which Harder and Towers both think is outdated and impractical.

“You cannot do any adjustments with this type of socket that will allow the patient to wear it full-term, especially the hemipelvectomy or disarticulation patient,” said Harder.

As the belly starts to drop, the proximal portion of the socket needs to be somewhat dynamic. Some older socket styles in the rigid systems do not allow this flexibility, added Towers.

Skillful prosthetists

Houser said since she has been an amputee for 35 years, she knows that the best prosthetist has the ability to listen to the patient’s needs.

“When they do not listen, changes are not made to a prosthesis,” said Houser. “Then the patient has reoccurring problems. In some cases, the patient decides not to wear the prosthesis at all and has to then rely on crutches.”

When this happens, complications can develop, causing frustration for the patient, added Houser.

“Being up and active on 2 legs allows me to feel like I do not have a disability and that I can live the life I choose rather than living by my limitations.”

Like Houser, Honish-Carman said she feels comfortable with a prosthetist who listens and has the skills to adjust the prosthesis so it is comfortable and does not cause skin breakdown.

Rusher appreciates a prosthetist who is patient, attentive, encouraging, educated on the latest technologies and willing to work with her throughout the pregnancy.

“You need someone who will keep trying until it works,” Rusher said.

Exercise and Weight Management for the Pregnant Amputee For pregnant amputees, it is important to control weight gain and to exercise those muscle groups that will feel the greatest amount of stress. These patients should also consider the shift of muscle and weight stressors throughout the body. Weight gain and loss Pre-pregnancy, it is important that the amputee shed extra weight, if necessary. Women who aim to lose weight pre-pregnancy are urged to do so healthily, as the body needs proper fuel and nutrients to support itself and the baby. Consulting with a nutritionist or physical trainer will expedite this process. Weight gain should be gradual and moderate throughout a pregnancy. Women who are obese at the time of conception should generally gain between 15 and 25 pounds. If she is of average weight, a woman should gain 20 to 30 pounds. Moderating weight gain is particularly important for single-leg amputees, as pregnant women often report swelling of the ankles in the third trimester. Less weight on that singular joint will reduce swelling and maintain ambulation for the patient throughout pregnancy. Strength-building exercises Lower extremity amputees may face extra stress on the pelvic wall if the uterus favors the side with the amputated limb. Strengthening those muscles early in the pregnancy will stave off muscle collapse when abdominal weight gain becomes significant. According to Spine-health.com, exercises such as a pelvic tilt or kegels are helpful. In amputees, back pain can often become unbearable. To strengthen back muscles, a woman can try arm and leg raises, wall squats and back stretches. Proper posture can also significantly reduce back pain throughout a pregnancy. Other tips Maintaining 30 minutes of moderate exercise each day will help soothe aching muscles, slow weight gain and prevent leg cramping. A modified total body workout like Pilates or yoga can help the her maintain and build strength, balance and posture. These exercises can also increase overall mobility and abdominal muscle toning. Non-weightbearing physical activities such as swimming and stationary cycling can reduce pressure on joints. For women with swelled joints, limb elevation and some bed rest are advised. Pregnant women should always consult with a doctor before beginning any exercise or diet routine. Descriptions of the exercises suggested above can be accessed at www.spine-health.com. For more information: http://articles.health.msnbc.com/id/100109375/site/100000000/. Accessed Dec. 19, 2005. http://www.spine-health.com/topics/conserv/preg/preg01.html. Accessed Dec. 19, 2005. — Denise Maher

Recommendations

Houser, Rusher and Honish-Carman recommend getting in excellent physical condition before becoming pregnant. It also helps that all three women have supportive husbands.

Houser’s husband comes home early to help with the kids.

“My amputation never really bothered him. He saw me more for who I was rather than just a person with a handicap.”

Rusher’s husband was also supportive.

“He never had any doubt that the pregnancy would be successful,” Rusher said. “He accompanied me to all my fittings.”

Honish-Carman’s husband helps with their other child.

“He often gives the baby a bath because that can be tricky with my prosthesis.”

Houser believes it is imperative to assemble a support team together such as a competent gynecologist, chiropractor (if needed), prosthetist and family and friends who can assist the woman through pregnancy and the post-birth processes.

“If you want a child, there is a will and a way, but physically you cannot do it alone,” said Houser. “The first couple of weeks after the birth can be crazy. But women should not underestimate their abilities. Yes, it might be difficult, but go for it anyway.”

Rachel Kelley is a staff writer for O&P Business News.