You’ve received a diagnosis…
What next?
There is nothing that will ever prepare you for receiving a poor diagnosis in pregnancy.
All the plans and dreams you had for your future are shattered and you will probably feel a range of emotions from shock, sadness and anger. You may feel emotionally frozen as you are faced with hundreds of questions while feeling very lost.
If you need more tests for a full diagnosis the waiting period can be a very long and lonely one also. Being faced with the decision to either continue or induce your pregnancy will untimely be one that only you and your partner can make.
You may feel like you are in a state of limbo, possibly “grieving” your baby even though they are still alive within your body.
There is nothing wrong with these feelings.
Remember it can be very difficult to take in information when you are distressed or in shock. It is important to have all the information you need about what has been diagnosed in your baby.
It may help to have someone with you at your appointments. It can also be useful to have a list of questions written down. Ask your medical team to explain things carefully and clearly, especially complicated medical terms.
The decision you begin to make may take time, no time, or weeks to make, but whatever your decision, only you can decide what’s right for you and your family. This decision may change and this again is completely normal, it is extremely difficult but also part of the process.
There is no rush to make a decision about your baby, even though it may feel that way.
Once you decide on the path right for you, or we call it your best decision for an awful situation you can begin to make the practical plans to continue your pregnancy or terminate your wanted pregnancy.
You may feel very sad and alone during this time and you may want to speak to someone who has been on this journey before. It can help to speak to someone who understands and has faced a similar experience.
See the resources below on continuing pregnancy and ending pregnancy
Memory Making
When planning a termination for medical reasons, waiting for a miscarriage, or expecting the death of your baby, you may have the opportunity to create memories of your pregnancy or baby.
Memory making can be a source of great comfort, not just in the moment, but for the days, weeks, months and years ahead. In our experience, a tangible reminder of our babies can help us to signify their importance to us, and their place in our families.
During Pregnancy:
Keep a journal of your pregnancy. Include anything you want. You can note important dates or your day to day feelings or experiences
Talk to or play music to your baby
Take photographs of yourself, your tummy, you and your partner, or your other children
You might like to visit places of significance. For example, parks or beaches. Take pictures or collect shells or pebbles to have tangible items from the pregnancy
If you are feeling movements, you could take note of things your baby reacts to like music or food or drinks
After Delivery
Depending on how many weeks your pregnancy has progressed, how you deliver, your or your baby’s medical condition, some or all of the following might be possible.
Take lots of pictures of and with your baby, including other family members if possible.
Take footprints and handprints (most bereavement teams will do this. If not, you can buy kits online)
Have moulds made of your baby’s hands or feet
Keep a lock of your baby’s hair
Have a baptism, blessing or naming ceremony
Spend time with your baby if at all possible
What mams say…
“My advice to anyone going through this is to get as much support as you can, whether through friends, bereavement groups, books or online. Whatever works for you and helps you deal and cope with this situation. Unfortunately, too many parents have to go through this ordeal and not enough are able to talk about or get the necessary support. Hopefully this organisation can be some support to you”
“Getting this bad news, the world comes crashing down. So much information is given to you and it’s hard to make sense of it all. My advice is to ask lots and lots of questions. The doctors tried not to influence our decision one way or another. I had to ask specific questions to see what my baby’s life would actually be like. Then I asked myself, is this what I want for my baby? Could I watch my baby go through this every day? Could I cope with their condition and look after them properly? How would this affect my husband, my other children? But most importantly, what would my baby experience every day…”