My Baby Has Been Diagnosed: The First Days After Bad News

What do parents go through when their baby has been diagnosed? A guide to shock, guilt, bonding, partners' differing reactions and telling family.

Before the birth there were moments you had imagined for months: coming home, the visitors, the first outing once the first forty days were over. Then a doctor came into the room, lowered their voice and said the sentences you never wanted to hear. From the moment you thought my baby has been diagnosed, time seemed to split in two: before and after. The diagnosis may have come straight after the birth, at a screening in the first weeks or after symptoms noticed a few months later. Whatever the illness, many of the things you go through in the first days are deeply human reactions that other parents in the same position also experience. In this article I look at what you may feel in the first days after bad news, what can happen between partners and in the extended family, and ways to make this period a little more bearable. For all your questions about your baby's diagnosis, treatment and future course, the most reliable source is the doctor and healthcare team who follow your baby.

My Baby Has Been Diagnosed: What Do You Feel at First?

Most parents who receive bad news remember the moment as a blur. Some of the doctor's sentences are heard; others are not registered at all. This is the mind trying to protect itself in the face of information that is hard to bear.

Feelings commonly experienced in the first days include:

• Shock and disbelief: Thoughts such as "There must be a mistake" or "The tests could have been mixed up". For a while everything may feel unreal.
• Grief: A deep sadness for the baby you imagined and the future you imagined. Grieving while your baby is in your arms may feel contradictory; but this is real grief for lost expectations.
• Fear: Whether the baby will suffer, how serious it will be, whether you will be able to cope.
• Guilt: "Did I do something during pregnancy?", "I should have noticed sooner." Even though many diagnoses have nothing to do with anything the parents did, guilt comes before logic.
• Anger: Anger directed at the doctors, at life, at God, at your partner, even at the baby, and then met with great shame.
• Numbness: Some parents notice they cannot feel anything and are frightened by this. This too is one of the ways the mind reduces the load.

These feelings do not come in order; moving from one to another within the same day is normal. None of them makes you a bad mother or father. Rather than trying to suppress your feelings, sharing them with someone you trust lightens part of the load.

The Added Burden of the Postnatal Period

This news often coincides with a time when body and mind are at their most fragile. The mother has not yet recovered from the physical effects of giving birth; sleep is disrupted and hormonal changes are continuing. After a caesarean or a difficult birth, the mother may find it hard even to walk along the hospital corridors. Changes in plans for breastfeeding or feeding can also create a separate sense of loss for the mother; the thought "I can't even do this" can feed guilt. It is important to make feeding decisions together with the healthcare team and not to see this change as a failure.

For this reason, the emotional ups and downs of the postnatal period, combined with the stress created by the diagnosis, can feel more intense. Crying spells, sleeplessness and intense anxiety may be expected in the first weeks; but if they increase as the weeks go by or stop the mother from looking after her baby, they need to be assessed. I have written in detail about postnatal mood changes in the article on postnatal depression.

If the baby is in intensive care, parents also face difficulties such as separation, waiting beside the incubator and being unable to touch. I have looked at this experience in the article on the psychology of mothers in neonatal intensive care.

Bonding With Your Baby

Some parents notice after the diagnosis that they are afraid to get close to their baby. The thought "What if I lose them, I shouldn't get too attached", or constantly seeing the illness when looking at the baby, can make bonding harder. This reaction is understandable and can change over time.

You do not need to do anything grand to bond with your baby. Touching them as far as the healthcare team considers appropriate, skin-to-skin contact, talking to them, singing lullabies, breathing in their smell and noticing their small reactions are all part of the bond. Your baby has a diagnosis; but they are your baby first. Calling them by name, thinking about which family elder they resemble, taking their first photographs: the ordinary moments every new parent experiences belong to you too.

Taking an active part in their care also supports bonding and reduces the feeling of helplessness. Learning from the nurses how to change their nappy, feed them or hold them strengthens the feeling that "I can do something".

Different Reactions Between Partners

Two parents who receive the same news may experience it in very different ways. One cries constantly and wants to talk; the other throws themselves into work, spends hours researching online or does not talk at all. Over time this difference can turn into hurt feelings such as "You're not even upset" or "You're crying all the time, nothing's getting done".

There is no single right way to grieve. One partner's silence does not mean indifference, and the other's tears do not mean weakness. During this period, simple questions partners can ask each other protect the relationship:

• "What was the hardest thing for you today?"
• "What do you need most from me right now: to talk, to be left alone, or practical help?"
• "Shall we go into the meeting with the doctor together?"

Fathers and partners often take on the role of "the strong one", putting their own feelings on hold while they look after the mother and baby. This may work for a while, but in the long run it builds up. It is important that both parents find a space where they can express their feelings.

Practical matters can also create tension between partners: who will take time off work, who will stay at the hospital, how other responsibilities at home will be managed. Talking about these decisions from a short list at a relatively calm moment, rather than late at night when tiredness is at its worst, can reduce arguments. Sharing responsibilities in turns allows both parents to find time both to be with the baby and to rest.

For single-parent families, or parents who are not getting support from their partner, this period can be even lonelier. In such a situation, bringing in sources of support such as a sibling, a friend or the hospital's social work unit early on prevents the load from resting on one person's shoulders.

Telling Family and Friends

In Turkey, news of a birth spreads quickly. Phone calls, messages and questions such as "When is the baby coming home, when can we see them?" follow one after another. Deciding whom to tell about the diagnosis, how much and when is up to you. You do not have to rush this.

Some practical suggestions:

• Prepare a short, shared explanation. A sentence such as "There's an issue with our baby's health that we're following with our doctors. Right now we need to rest and focus on each other" explains the situation without giving details.
• Choose a family spokesperson. A sibling or close friend you trust can pass news on to relatives and save you from answering the same questions again and again.
• Don't hesitate to limit visits. For some families the forty-day tradition (the customary first forty days of rest after a birth) can be a valuable reason to rest and be protected during this period.
• Be prepared for unwanted comments. Remarks such as "There's never been anything like this in our family", "It's the evil eye" or "It happened because you were so upset during pregnancy" are hurtful. A short reply ("Our doctors told us this is nobody's fault") is enough to close the subject.

If there is an older sibling at home, they also need an explanation suited to their age. Short, honest sentences such as "There's something in your little brother's body that the doctors need to take care of, so Mum and Dad are staying at the hospital a bit longer. You're not the reason for this" stop the child producing frightening explanations with their own imagination.

For loved ones: what should and shouldn't be said?

If you are reading this as a grandmother, aunt, friend or neighbour, you may be wondering how to approach the new parents. The examples below are fictional.

Words it may be wise to avoid:

• "God is great, it'll turn out to be nothing, doctors always exaggerate." (It belittles the information the parents have received.)
• "At least you're young, you can have another child." (It ignores the value of this baby.)
• "If I were in your shoes, I couldn't bear it." (It makes the parents feel alone and different.)

Words that can be supportive:

• "Congratulations on your baby, I can't wait to meet them."
• "What hard news. Whenever you want, I'm ready to listen."
• "Can I bring you some food this week, or shall I look after your older child?"

It is important not to forget to celebrate the birth. Whatever the diagnosis, a baby has come into the world, and parents often want their baby to be welcomed like any other.

My Baby Has Been Diagnosed: How Can You Protect Yourself in the First Days?

• Take in information bit by bit. You don't have to learn everything on the first day. Asking the doctor "What's the most important thing I need to know right now?" clarifies priorities.
• Write down your questions. Note the questions that come to you at night in a notebook or on your phone, and take this list into appointments. If possible, have two people attend the meetings.
• Be careful online. The stories you come across on search engines and forums are often the most severe examples and may not reflect your baby's situation. Ask your doctor to recommend reliable sources of information.
• Don't neglect your basic needs. Eating, drinking water and sleeping, however briefly, are not luxuries but conditions for being able to care for your baby. Accept concrete help from loved ones, such as bringing food.
• Focus on today. The answers to questions about years from now, such as "Will they be able to go to school, get married?", may not be knowable right now. The question "What can I do for my baby today?" brings the mind back to the present.
• Connect with other parents in a similar position. Patient associations and family groups offer the chance to talk to people who have been down the same road. But make this connection when you feel ready.

The diagnosis given to your baby is not the whole of their story; your love has been part of that story from the very beginning.

When Should You Seek Professional Support?

Intense sadness and anxiety in the first weeks after bad news are expected reactions. However, it may help to get support from a mental health professional in the following situations:

• Sleeplessness, loss of appetite and constant crying have continued for weeks without easing
• You are having marked difficulty looking after your baby, touching them or engaging with them
• Guilt fills all your thoughts
• Communication with your partner has broken down completely or you are in constant conflict
• A state of feeling nothing at all has gone on for a long time

If thoughts of harming yourself or your baby, thoughts of ending your life, or feelings such as "It would be better if none of us were here" are going through your mind, do not carry this alone. In an emergency, call 112 (emergency services) or go to the nearest emergency department. An assessment by a psychiatrist may also be important in the postnatal period; you can talk about this openly with your obstetrician or your baby's paediatrician.

How Is This Process Addressed in Therapy?

Psychological support does not replace your baby's medical care; but it helps you carry this process. In the first sessions after the words "my baby has been diagnosed", naming feelings, normalising grief and supporting day-to-day functioning usually come to the fore.

Within cognitive behavioural therapy (CBT), work can focus on guilty thoughts, catastrophic scenarios about the future and tolerating uncertainty. Sessions attended by both partners can help them understand their different ways of grieving and find ways to support each other. When it is hard to leave home because of the hospital and caring for the baby, online therapy can be an accessible option during this period.

Frequently Asked Questions

Sometimes I feel nothing when I'm looking after my baby, is this normal?

After heavy news, emotional numbness is one of the ways the mind protects itself and is often temporary. If this state lasts for weeks or makes it harder for you to look after your baby, it helps to talk about it with a professional.

Relatives keep insisting on seeing the baby, how can I say no?

A short, clear explanation is enough: "Right now our baby and we need to rest; we'll call you when we're ready." It is also possible for a family member to pass on this boundary on your behalf.

Should I share the diagnosis on social media?

This is entirely your decision and you don't need to rush. Sharing brings support to some families, while for others it can create a heavy load of questions and comments. Sharing only with your close circle in the first weeks gives you time for later decisions.

My partner never cries, aren't they upset?

Everyone grieves differently. Some people carry their feelings by doing things, by researching or by staying quiet. Asking your partner "How are you doing through all this?" can open a door for them to share their feelings too.

• #newborns and parents
• #bad news
• #parent psychology
• #ill baby

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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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