I’m Having a Baby With What?

Introduction

Like every expectant parent, you probably had an image of playing with your baby, feeding him, kissing him, bathing him, playing peek-a-boo with him, brushing his soft hair… In those images your baby was “perfect” – two big beautiful eyes, two ears, two arms, two legs, ten fingers, and ten toes. However, and whenever, you found out – whether during pregnancy or at birth – what an enormous shock it must be/have been to learn that your baby would arrive different from how you had imagined!

Whether you were informed of your child’s hand situation prior to the birth or not, you still may be in some form of shock. Take a deep breath!! Remember that you are in good company. There are thousands of children with hand/arm/multiple limb differences around the world, who mostly grow up to be happy, competent, and contributing members of society.

I also want to welcome those of you who are adopting, fostering, or raising children who are not your biological children, as well as those of you raising children who have experienced limb loss due to an accident, injury, cancer, or some other form of traumatic experience.

I’m Having a Baby With What? is intended to address many of the difficult issues that you may be experiencing and guide you through this challenging time. When you are done reading this, go on to Now What?

Hand/Arm Appearance

One of the major concerns for parents is what their child’s different hand/arm will look like. If you have had your baby, of course you know what it looks like. This may sound unnecessarily harsh to some, but you may or may not be pleased with what you see. Your reaction is a combination of your particular aesthetic preferences and the actual architecture of the hand/arm. Some differences are more obvious than others.

On the one hand, you are likely to find your baby’s hand/arm, like the rest of your baby, not only adorable and sweet but actually beautiful and special. While this response is not “better,” it should make things easier for you, since you may feel more comfortable and confident taking your baby out in public. At the same time, remember that others may not find your child’s hand/arm adorable in the way you do, and peple will most likely ask questions.

On the other hand, if your baby’s hand is unattractive to you at the current moment, try not to judge yourself for your response, but you may want to try to focus on the million little ways that love your child. It is highly recommended that you seek help from a professional therapist, so that you can work towards acceptance, which may take some time or occur quickly. Since your reaction will affect your child immensely, you owe it to them to deal with your feelings. Realize that this is a process, and that your reactions and feelings will change over time.

The Importance of Touch

Regardless of your feelings, you can help your baby by touching their hands/arms frequently. I cannot emphasize this enough! Touch is an extremely powerful tool that can have enormous benefits for you and your child. Your baby needs to develop positive associations of comfort and love with his “different” hand or arm. Touching your baby’s hand/arm is one of the best ways to create these positive associations, especially when the child is young. Massage the hand and arm throughout the day and hold the hand whenever you can. You may wish to take an infant massage class or get a book on the subject.

After you have experienced the discomfort of someone commenting on your baby’s hand/arm and have had time to calm down, it is especially important for you to re-connect by touching your child’s hand/arm.

If you are expecting, you may have heard vague statements like, “Well, we know that there is a left hand, but we can’t see how many fingers there are,” or “We don’t know how far below the elbow the arm extends.” How frustrating!! But even if the doctors could describe to you exactly what your baby’s hand will look like, you still won’t know unless they can show you a photograph or you find a picture on line. One warning: if you do search for pictures on the internet, prepare yourself to see some fairly powerful images. It is difficult for many people to see pictures of children with illness, disease, and physical differences, and you may not be able to avoid seeing some of these pictures as you search for ones that may look like your child’s hand/arm.

Grieving

Grief needs to be expressed, not fixed

Elizabeth Miller, Reden Yoga

In the early days after finding out that there is something “wrong” with their child, most parents spiral through a range of intense emotions. They think it must be a mistake, or they search in vain to find an explanation. They become angry at G-d or their spouse, asking, “Why me?” They may feel guilty, poring over the past to figure out what they did or did not do to make this happen. They become afraid of what the future will bring, or worry how their child will manage. Parents literally go through a grieving process, much like the grieving process that people who have lost a parent, sibling, or close friend experience. In this case, they mourn the loss of the “normal” child that they had expected to have. Professional counselors advise that parents recognize that they are, in fact, in mourning, and seek help before they are able to accept the child’s disability.

For those of you who found out during pregnancy, there is not only the loss of the longed-for “perfect child” that you must grieve – there also is the loss of your blissful pregnancy. While it is true that there are no guarantees that any pregnancy will be without complications and that the child will be “perfect,” most pregnancies are uneventful, and most babies are healthy. For most parents, being informed that one’s expected baby won’t be “normal” can be traumatic and devastating. One mother wrote that it was as if the ‘innocence’ had been taken away from her pregnancy when she found out that her son would not have a hand. She found it particularly difficult to be around other pregnant women who were in the blissful state she no longer was in.

I recommend that you take a look at some of the literature on grieving (link) as well as some excellent websites that outline the stages.

Fears

On the one hand, it is completely normal, and to be expected, that being told that there is something “wrong” with your child would trigger all sorts of fears. These generally revolve around concerns that your child won’t do the “normal” things that other kids do, like tie their own shoelaces, make friends, go to the prom, drive a car, and play sports. These are normal fears, but recognize them for what they are – fears. Remember that many “normal” kids don’t do some of these “typical” things.

On the other hand, your fear makes sense. In times of uncertainty, some people try to deal with fear by trying to anticipate everything that may occur. This helps people to feel that they are still “in control” of the situation despite the reality. While this can be a positive outlet for fear and anxiety, it also can provide a false feeling of security. The problem is that one can’t anticipate everything that can happen.

Guilt

I’ve been told a million times that it’s not my fault, but for some reason, I continue to question every possible facet of my daily life to try to find a reason.

Mother of a child with a hand difference

Despite the fact that you did not cause your child’s hand difference, it is absolutely natural, and to be expected, that you would feel guilty and blame yourself. It also is perfectly normal to ask “why me?” But it also is important to recognize that no one really knows what causes most limb differences, According to Dr. Erik C. King, orthopedic physician with the Congenital Hand and Upper Extremity Team at Children’s Memorial Hospital in Chicago, Illinois, “The majority of upper extremity malformations have no identifiable cause.” Click here to read his article, “Helping Hands: The Management of Congenital Hand and Upper Extremity Anomalies”

Spouse/Partner Reaction

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When she found out during her pregnancy that her daughter would
be born with just her right hand, the mother of Sydney Mesher,
the Rockette with an upper limb difference, wondered how she
would ever wear a wedding ring. Sydney’s father started
wearing his ring on his right hand and has done so ever since.

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On the one hand, you and your spouse or partner may, and probably will, respond differently to the hand difference, in a myriad different ways. For example, one of you may need to tell everyone under the sun, while the other may refuse to tell anyone. One of you may feel overprotective of your child, while the other may want to feel the need to “toughen him up.” It is critical both to allow the spouse the space to handle the situation in his own way and also find a way to communicate effectively. There may be important decisions to be made early on about surgery that require the support of both parents. Professional help may be beneficial to enable both partners to handle the multiple issues that arise.

On the other hand, do not expect your spouse or partner to be able to handle all of the emotional load. Find supportive and empathetic people with whom you can discuss issues that you face and share your true feelings. Be picky about your audience; try not to unload on people who aren’t able to be empathetic and non-judgmental. If you are from a family that does not discuss “feelings”, then find others who will allow you to vent and cry.

If you found out while pregnant, you will need to discuss with your spouse/partner to whom you want to disclose that the baby will have a hand difference. Do not feel pressured to inform anyone who will increase your anxiety level, including close family members.

Religious Crisis

It is recomended that you consult a religious advisor to discuss any crises of faith that may have arisen as a result of this situation. It is very common during the grief process for people to challenge G-d, feel betrayed by G-d, or feel punished by G-d.

Family Matters

On the one hand, it can be very challenging to take care of others when you are upset, and it is totally understandable that it may seem overwhelming to focus on your other children and/or your spouse/partner as you deal with the shock of your baby’s difference. But your family still needs your presence, and it can be helpful to stay grounded in family routines as you are adapting to an unexpected reality.

On the other hand, if you feel that you need help because you are feeling overwhelmed, it is absolutely understandable that you may need to prioritize finding emotional, physical, and/or physical assistance from extended family, friends, your religious community, or any other support networks you are fortunate to be part of.

Avoidance

It can be really easy to fall unconsciously into the defensive mechanism of “avoidance”. Sometimes, busyness can be a way of coping by not confronting feelings. You owe it to yourself and to your child to recognize the feelings that arise. You will be a better parent and a healthier person psychologically if you address your feelings rather than run from them. It may be wise to seek professional counseling.

Comments from Others

Whenever possible, try not to let others – whether friends or well-meaning medical professionals – minimize the situation by telling you, “at least your child doesn’t have a brain tumor” or something like this. It’s not a tumor, but a hand difference understandably is a big deal, especially right now, particularly to you.

Sometimes friends and families may use platitudes, also called a “thought stopping clichés”, either in an attempt to make you feel better or because they don’t have a better way to respond. We all know these statements: “Things will turn out for the best”, or, “There must be a reason…”, or, “G-d has a plan”. To some parents, these comments may be helpful and reflect genuine empathy. To others, these statements may seem offensive, unwanted, and/or hurtful.

It can be easy to dwell on others’ obtuse remarks, particularly when we are sleep-deprived or on-edge. However, it may be preferable to let friends and family know in a kindly, forthright manner that you appreciate their concern but would prefer that they refrain from comments at this time. One parent simply stated to folks, “please don’t feel obligated to think of things to make me feel better; I know you care and feel empathy for me, so for now, that’s what I need to hear.”

Responding to Questions

It can be helpful to rehearse answers to the following frequently-asked-though-none-of-anyone-else’s-business-questions: “What happened to your child’s hand?” “Did you take any medications/drugs during pregnancy?” “Have you considered surgery?”

It can be emotionally upsetting for parents to respond repeatedly to such invasive questions, often from complete strangers. It may seem preferable to try to avoid upsetting questions and unwanted attention. But there is a fine line between protecting yourself and isolating yourself. You still need to be out in the world with your child.

It can be even more upsetting to parents to anticipate that their child will have to face the “what happened to your hand?” question on a routine basis. (To read some essays about this question, click here). It is very painful for parents, even expectant parents, to know that they cannot shield their child, even though these questions are years away. One expectant mother explained, “My heart breaks when I visualize my child having to explain/justify the way he was born.”

Labels

You need to prepare yourself for the rather unfortunate terms and labels that people in our society use for those who have physical impairments. Parents often find it offensive and grating to hear others refer to their child’s hand as a “birth defect”, “disability”, or “handicap.”

For example, does a child with a congenital hand difference have a hand or finger “amputation”? That term is appropriate for people who have lost a limb, but can be offensive when used to refer to people who were born without the limb. Variations of the word “amputation” (amputated, amputee) appear frequently in the medical literature about hand differences, despite the fact that many parents would not identify their child as having a hand amputation.

Here are some additional suggestions for those of you who found out about your baby’s difference while pregnant:

Test Results

While I know that my fears will return, when I finally got to hold my baby all of my fears dissolved.

Many expectant parents find the interim time from the news of the ultrasound to the delivery unbearable – fraught with emotion and very painful. The challenge is to find a way to manage these emotions in such a way that the pregnancy can thrive as it should. The emotional rollercoaster you’re on won’t end until you’re able to hold your baby. Your pregnancy may seem interminable until that time.

Second Opinion

Make sure that you feel confident in your ob/gyn’s medical expertise. If not, get a second opinion. You have to have a good relationship with your doctor so that, together, you can determine the best course of action. For example, discuss the pros and cons of further testing with your doctor. For some, it may be better not to do further testing. Others may wish to have amniocentesis or Level II ultrasounds to determine whether your baby’s hand problem is part of a larger syndrome. You probably will want to consult a geneticist to determine, if possible, the cause of the difference. This is especially important if you plan to have additional children. Remember though that often there is no reason.

Consider writing a birth preference sheet that informs your medical team of the baby’s hand difference and respectfully requests that they not dwell on the hand difference at this important time.

Taking Care of Yourself

In difficult times carry something beautiful in your heart.

Blaise Pascal

Try to find an outlet that allows and helps you to connect to feelings of well-being. For some people, just sitting quietly and allowing themselves to feel supported and loved can open channels of connection to a “higher power.” For others, a comforting image, memory, or phrase (such as “everything will turn out okay”) may help them to feel that all is well despite this difficult time. Some people find that getting a massage, going to a house of worship, or visiting a particular friend can be very soothing and validating.

Only Part of the Story

While it may seem that your child’s entire life will revolve around their difference, it is important to know that the difference will be present in their life but not be the only factor.

© 2022. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy