The problem with diagnosis of long-term or life-threatening disease in unborn children is that the mother may be pregnant enough for others to see it, and questions that would not be asked in the early stages of pregnancy will now arise from all sides.
The questions that many people will ask are about the mother’s due date, the sex or name of the baby and how happy the family is; these can be heart-breaking conversations for a parent who knows the baby will die shortly after birth or have a severe condition.
Parents have a choice depending on whom they talk to; to answer those questions, to change the topic of the conversation or to tell the person that the child is ill. Once again, this is totally personal and there is no right or wrong approach. However, be aware that different answers will imply different reactions and not all are welcomed.
For instance, let’s say that you have just divulged to the person operating the till at your local supermarket that your child will die and the only answer you get is how much you need to pay for your groceries, you could be left feeling exposed and alone in your tragedy. Also, sometimes the people you talk to are not prepared for such news and may try to diminish its meaning to protect their own emotions. I would say that if you feel the need to talk, try to choose someone whom you know will care.
The next section provides suggestions to assist others to understand and respect your unique situation and choices. One may ask, ‘Why should you help others with your child’s diagnosis?’ It is an underlying but real consensus that ‘what is defective is better gone and forgotten’.
Know that words will not ease the pain; avoid using a higher being’s will to justify the death unless you are certain it is already your friend’s belief.
The following tips are not designed to ‘help’ others; they are designed for you to bring about changes in other people’s attitudes towards your pregnancy and precious baby in the event that they are having trouble facing your reality. If you have just found out about your baby’s condition, you may not be ready to talk about it, nor confront everybody about ‘your reality’. Feel free to read those lines later down the track.
Finally, if you never feel the need to talk about your pregnancy to anyone, please do not feel pressured to do so. It is a personal choice.
Tips for ‘helping’ others with the diagnosis
Refer to your child by his or her name. Once again, it is much harder to pretend the situation is temporary if you refer to the ‘situation’ as a ‘real human being’.
Allow yourself to express your pregnancy ‘news’ verbally
The baby moves and does new things and, like any pregnant mother, you experience tiredness and other pregnancy symptoms.
Talk about your plans
For example, if you have decided to have balloons, pink or blue flowers or anything at all at the birth or funeral of your baby, let others know if you want them to appreciate your need. It is a way of sharing with friends and family a small part of your child’s story.
Talk about all the things your precious child will be able to do
Whatever the disability, he or she is a great individual with his or her own potential and uniqueness. They can learn new skills, and be great friends. Do not (or do not let others) underestimate the fantastic life your child will live and give you.
Tips for friends during the pregnancy
Carrying a child that will die or has a severe condition is a very traumatic experience. It may mean listening to your friend talking about their experience, holding their hand, cooking them a meal or not avoiding them or the subject. You could contact organisations that help with child loss and have sent out helpful bereavement information and materials.
‘I was sometimes pulled up in the supermarket by people wanting to know what was “wrong” with Jared. I wished that they wouldn’t say that in his hearing. And sometimes they would talk to him like he was deaf, or extremely depressed: “Keep your head up mate, you’ll be okay”, “‘don’t you worry, love”’.
“Most of my family was supportive, I heard a lot of ‘you are so strong, I could never do this’ and all I wanted to say was ‘I am not strong and I don’t have a choice’.”
Try to understand the situation
Find out what you can about the diagnosis, listen to your friend’s wishes and plans and allow them to experience a range of emotions without patronising or judging them.
Treat your friend as your friend!
Rather than as some very unlucky person who is going through a terrible time. Within the next few months, your friend will grieve over the baby’s diagnosis but he or she will also have days on which they are feeling okay and would love to do something, or talk about something else. Keep encouraging a return to normal activities but be timely and sensitive.
Don’t try to give advice
Like telling them to get over their feelings, telling them how imperfect their child will be, to remember their other children, or treating them as if they are irresponsible or telling them what you would do. It is neither your child nor your choice.
Ideas to remember to help your friend
Know that words will not ease the pain; avoid using a higher being’s will to justify the death unless you are certain it is already your friend’s belief; be patient even if they seem withdrawn or angry at first. Be sensitive to the fact that they may not want to see or hold babies of the same age group as the child that they have or had.
The support of friends and family plays a vital part in this journey. It is my belief that this support will make a huge difference in the parents’ lives. There are also many other sources of support, such as support groups for parents going through the same experience. In the event of parents having little support from others, be gentle on yourselves. You are the one having this child and whatever your decision or your plan is, you need not to worry about people’s criticism if you encounter any. Remember that at the end of the day, you will have to live with yourself and with your choices, while others will move on with their lives.
Additionally, just as your parents were shocked by the news, so may your family and friends be. Give them time to come to terms with the situation.
‘Some people have said things out of ignorance at times, but I know that they would never have wanted to hurt or upset us, and they just didn’t realise about his condition.’
“Because we terminated the pregnancy, not many people asked us how we coped. They assumed that terminating our baby was a ‘choice’ and assumed we would feel relieved rather than bereaved for our lost child.”
“The day after finding out my baby would die and that I was carrying to term, my mother came over, yelling that I was making a mistake, that I would purposely traumatise my living children as attention-seeking. It took a few days for her to accept that the pain would not go away and that it was MY decision; unlike when I was a child, my mother could not protect me from the pain of losing my baby.”
Extract from High Risk Pregnancy and Foetal Diagnosis; Your journey by Stephanie Azri, available through Footprint.
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