Family of a Child With SMA: Staying on Your Feet After the Diagnosis

What does the family of a child with SMA go through after diagnosis? Guidance for parents on shock, guilt, the couple relationship, siblings and relatives.

When you walked out of the doctor's office, the corridor may have seemed longer than ever. A few sheets of paper in your hand, half-finished sentences ringing in your ears, and in your arms or beside you, your child, smiling just as they were a moment ago. A diagnosis of spinal muscular atrophy, or SMA, is usually made in infancy or early childhood, and it places parents, all at once, in a world they were never prepared for. Being the family of a child with SMA means hospital appointments, equipment, physiotherapy and learning a new medical language, but it also means carrying intense feelings that nobody tells you about. In this article I look at the family's inner world from the first days after diagnosis through to long-term care, at the relationship between the parents, at siblings and at communication with the people around you. All decisions about treatment belong to the medical team looking after your child; here I will focus only on the emotional side of the load.

What Does an SMA Diagnosis Bring Up in a Family?

For many parents the news first produces a kind of freezing. You hear what is said but cannot make sense of it. On the first night back home you may not be able to sleep, or you may, oddly, fall into a deep sleep. Both are expected reactions.

Feelings that are common in the first weeks include:

• Denial and the urge to check again. "Maybe they read it wrong, let's have it looked at somewhere else" is a very human thought. Asking for a second opinion is your right; but it helps to ask yourself whether it is an escape or a genuine need for information.
• Guilt. Because SMA is passed on genetically, parents often ask, "Did I give this to them?" Being a genetic carrier is nobody's choice and nobody's fault.
• Grief. Grieving while your child is right there with you can feel strange. Yet the change in what you had imagined, the babyhood, the first steps, running around in the park, is a real loss, and feeling sad about it does not mean you love your child any less.
• Anger. You may feel anger towards the doctor, the hospital, the health system, your partner, even towards God or life itself. Anger is often the outward face of helplessness.
• Hypervigilance. Watching your child's every breath and every cough, getting up again and again during the night to check on them, is very common in this period.

It is also normal for these feelings to replace one another within the same day. You may feel hopeful in the morning, crushed in the afternoon and simply tired by evening.

Being the Family of a Child With SMA: How Does Daily Life Change?

The first shock of the diagnosis gradually gives way to a routine, but this routine is very different from the one before. In a sense, the home can turn into a small care unit. Breathing support, feeding schedules, positioning, exercises and a calendar of check-ups: one parent, very often the mother, begins to manage all of it.

In Turkey this process brings some additional burdens. Taking time off work to travel back and forth to specialist centres in the big cities, corresponding with institutions about medicines and equipment and renewing medical reports create a whole separate workload. At a time of high living costs, one parent having to give up work can also shake the family's livelihood. Everyday obstacles, such as a block of flats without a lift or a street that is not suitable for a wheelchair or buggy, add to the exhaustion.

Faced with this load, many parents say, "I can't afford to stop," and put their own needs entirely on hold. In the short term this is a survival strategy; in the long term it prepares the ground for burnout. The signs I describe in the article on caregiver burnout are also frequently seen in parents caring for a child with SMA: constant tiredness, impatience, disrupted sleep and a loss of interest in things that used to bring pleasure.

Between Partners: Living the Same Loss Differently

An SMA diagnosis deeply affects a couple's relationship. Often both partners feel the same pain but express it in different ways. One researches constantly, spends hours on forums and prepares lists of questions for the doctor; the other avoids bringing up the subject and throws themselves into work. After a while this difference can turn into accusations such as "You don't care" or "You blow everything out of proportion."

Yet both attitudes are different ways of coping with the same fear. Not dismissing your partner's grief just because it does not look like yours is the first step towards protecting the relationship.

Some sentences that can help between partners:

• "You find it hard to talk about this, and I can't stop talking about it. Shall we sit down one evening a week just for this?"
• "I'll take the night tonight, you get some proper sleep."
• "I'm scared too. You don't have to be the strong one."

Sentences that can wound include:

• "Was there someone like this in your family too?"
• "You were always at work anyway, I'm dealing with all of this on my own."
• "Stop crying all the time, it's affecting the baby too."

Fair sharing of the care work is also something that needs to be discussed. Invisible tasks (remembering appointments, corresponding with institutions, waking up at night) tend to pile up on one person. Writing this load down and redistributing it together can reduce resentment. If you notice that you are struggling as a couple, couples therapy can offer a safe space for these conversations.

Siblings, Grandmothers and the Wider Circle

Healthy siblings

If there are other children at home, they are affected by this process too. When the parents' attention is largely directed at the child who is ill, siblings can feel invisible. Some try to become the "good child" who never causes any trouble; others attract attention through anger, slipping at school or physical complaints.

It is important to give a sibling a short, honest explanation suited to their age. Sentences such as "Your brother's muscles are weak, so the doctors are helping him. This didn't happen because of you, and you can't catch it" are enough for young children. Even a short time spent alone with them each week nourishes the feeling that "I matter too." I cover this topic in detail in the article on the sibling of a sick child.

Grandmothers and the extended family

The extended family can be both a great source of support and an additional burden. A grandmother may lend a hand with care, but she may also hurt the parents with remarks such as "We didn't have illnesses like this in our day," "Take them to this healer" or "The daughter-in-law wasn't careful enough." In situations like these, setting a boundary is not disrespectful. Saying "I know you want to help us. What would help us most is if you could pick up our eldest from school on Tuesdays" turns good intentions in a concrete direction.

Neighbours and acquaintances

Pitying looks from those around you, or remarks such as "Oh dear, may God make it easy for you," can isolate a family even when they are well meant. Some families prefer to limit visits in the first months and to share news through a single person. When a child needs to be protected from infection, discussing visiting rules with the doctor and stating them clearly to others is protective for both physical and mental health.

The Child's Own World: What to Keep in Mind at Each Age

The different types of SMA appear at different ages, so the psychological questions a family faces also change with the child's age.

In infancy, the most important thing is the bond. Even amid equipment, hospital routines and worry, cuddling, singing lullabies and making eye contact nourish a baby's sense of security. Protecting moments of "simply being a parent" within intensive medical care is good for the parent as well.

In the preschool and school years, the child begins to notice their difference. The question "Why can't I run?" may come. It is important to answer it without lying, without frightening them and while also making visible what they can do: "Your muscles work differently. Running is hard, but you draw beautifully and you're the one who asks the most questions in class." Cognitive development is usually unaffected in children with SMA; games, books and responsibilities that speak to their intelligence and curiosity therefore support their sense of self-worth.

In adolescence, peer relationships, appearance, the wish for independence and worries about the future come to the fore. A young person may want to take part in decisions, to speak to the doctor themselves and to have their privacy respected. Giving them a say and supporting their autonomy also reduces the anger that overprotectiveness creates.

What a child with SMA needs is not only strong muscles; it is to be seen as bigger than their illness.

Practical Suggestions for the Family of a Child With SMA

It is not possible to "do everything right" in this process. Still, some steps can lighten the load:

1. Take in information from one source, a little at a time. Not every post on the internet describes your child's situation. Writing down your questions and taking them to your doctor creates less anxiety than searching in the middle of the night.
2. Make a task list and hand it out. For everyone who offers help, set a concrete task: the grocery shopping, taking a sibling to the park, dealing with paperwork.
3. Pay attention to your own body. Sleep, eating and short walks are not luxuries; they are necessary for care to be sustainable.
4. Connect with similar families, but in moderation. Solidarity among SMA families is extremely valuable; still, if hard news about other children affects you deeply, taking a break from these groups is also your right.
5. Allow room for joy. The moments when you laugh with your child, or watch a series and forget about the illness, are not something to feel guilty about; they are breathing space.
6. Prepare a short "emergency" file. Gathering the information the medical team has given you, important phone numbers and report dates in a single file eases your mind in moments of crisis. Sharing this file with your partner and with a relative who helps with care gives you the feeling that not everything depends on your memory.
7. Leave yourself an identity outside caregiving. Even if only for an hour a week, do something that reminds you who you are outside the role of mother or father: having tea with a friend, listening to music you love, a small craft. When you hand yourself over entirely to the caring role, tiredness builds up faster.

Many parents read these suggestions and think, "I don't have time for any of this." That is completely understandable. You do not need to put them all into practice at once; choosing just one this week is already a beginning.

When Should You Seek Professional Support?

For the family of a child with SMA, sadness, anxiety and tiredness are expected reactions. However, seeing a mental health professional may be helpful in the following situations:

• Intense unhappiness, hopelessness or a sense of emptiness almost every day for weeks
• Marked disruption of sleep, appetite and day-to-day functioning
• Constantly building catastrophic scenarios about your child's health and being unable to escape them
• Communication with your partner breaking down, with constant arguments or, on the contrary, no talking at all
• Long-lasting behavioural changes or school problems in siblings

Sometimes the load becomes so heavy that thoughts like "If only it could all be over for all of us" come to mind. If you are carrying thoughts like these, do not see them as weakness and do not stay alone with them; tell someone close to you, and at any moment when you do not feel safe, call 112 (emergency services) or go to the nearest emergency department. If depressive symptoms are marked, an assessment by a psychiatrist is also important.

How Is the SMA Family's Journey Addressed in Therapy?

Psychological support does not replace your child's medical treatment, but it can help the family walk this long road together. Within a cognitive behavioural therapy (CBT) framework, guilt and catastrophising thoughts are recognised, skills for living with uncertainty are practised, and small spaces of the person's own are rebuilt within the load of care.

In individual sessions, a mother or father can talk safely about the fears, anger and grief they cannot express in front of their child. In couple sessions, the aim is for partners to understand each other's ways of coping and to reorganise how tasks are shared. For siblings, play-based work opens up space to express their feelings. If attending sessions is hard amid an intensive routine tied to the hospital and the home, sessions can also continue online.

Frequently Asked Questions

When does the guilt after an SMA diagnosis go away?

Guilt has no fixed end date; in most families it comes in waves and its intensity lessens over time. Knowing that being a genetic carrier is nobody's fault helps on an intellectual level, but it takes time for the feeling itself to soften. If guilt locks up your daily life for a long time, talking about it with a professional can help.

Will crying in front of my child harm them?

Showing your feelings now and then teaches a child that feelings can be lived through. What matters is to settle them afterwards and rebuild their sense of security by saying something like, "I got a bit sad, but I'm all right, I'm here with you." Constant, uncontrolled crying, on the other hand, may be a sign that you need support too.

Relatives keep bringing treatment suggestions, what should I say?

A short, clear sentence is usually enough: "Thank you for thinking of us, we make treatment decisions together with our doctors." Repeating this sentence every time protects your boundary without getting into an argument.

When and how should I tell their sibling?

The sibling is already sensing the change at home, so telling them early and in an age-appropriate way is generally better. Give a short, concrete explanation that does not place any blame; give them time for their questions, and where you do not know the answer, do not hesitate to say, "I don't know that either, I'll tell you when I find out."

• #sma
• #spinal muscular atrophy
• #parents of a sick child
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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