What happens after an anencephaly diagnosis?
What happens now?
Although there is nothing that you, or anyone else can do to change the final outcome, you do have a choice about what happens next.
Some parents in the UK who receive this diagnosis opt to end their pregnancy early. However, you do have the option of continuing with your pregnancy.
Take time to understand and take in everything that you’ve been told, so that you don’t feel rushed or pressurised into making a decision.
Opting to end your pregnancy early
Making the decision to end a much-wanted pregnancy is never easy. Understanding that your baby would not survive in any case, may make this decision easier for some people, but not everyone.
If you are considering ending your pregnancy, it’s important to think about whether or not you might want to meet/see your baby. There’s no right or wrong way. It’s perfectly normal to feel worried about how tiny your baby will be or how they will look.
You don’t need to make your mind up straight away, but if you think that you may want to meet your baby you should discuss this with your midwife.
As some hospitals may not be able to offer you this option if your baby is under 20 weeks, your care may need to be continued at a different hospital if this is important to you.
Continuing with your pregnancy
It is important to understand that if you continue with your pregnancy there are higher risks for you. Polyhydramnios (too much amniotic fluid in the womb) may develop, and your baby may not make it to full term.
If you have other children, they will usually pick up how worried or upset you are. When you are ready, it is important to share a little of what is going on and reassure them. A simple but honest explanation is often best.
Organ donation
Some parents have continued with an anencephaly pregnancy with the hope of donating some of their baby’s organs. If this is something that you are considering, it is important to discuss this carefully with your doctor. However, the chances of donating successfully are very slim, owing to prematurity and low birth weight.
Preparing for your baby’s delivery
Use the time before delivery to make plans and preparations for delivery and afterwards. There is no right or wrong way; it is important that it is just as your family chooses it to be. This can include choosing a name, and buying or making an outfit, shawl and little hat. Keep a camera handy for your photos, maybe choose a frame for your picture or your scan. If you have other children, they may wish to draw a picture for the baby. It may also help to arrange to meet some of the midwifery team who will be involved in the delivery of your baby closer to your due date.
Keepsakes of your baby
This may not be something you think of immediately, but parents often tell us how they gained comfort from having something to remember their baby by. Examples of this could be:
- Scan pictures or photographs
- A recording of your baby’s heartbeat (this can be recorded and put into a teddy bear)
- Taking your baby’s hand and footprints
- Some parents make a memory box for their keepsakes
Planning a funeral for your baby
Many parents aren’t aware that they have choices regarding a funeral. What might be right for one set of parents may not be right for another, and it’s so important that you are able to say goodbye to your baby in the way that you want to. Hopefully the following information will help you to understand what’s possible, so that you are able to make the best choices for you. It might be helpful to talk to your faith leader and / or a funeral director.
Remember – All babies can have a funeral and it is up to you whether to have one or not. Having a burial or a cremation is your choice. Cremation is possible, and if your baby is very tiny, it may be suggested that they are cremated with a cuddly toy of your choosing. Some hospitals will be able to arrange a funeral for your baby. If you choose this, do check carefully that their arrangements regarding exactly what will happen with your baby are going to be right for you, and that you are comfortable with them. You can choose to arrange and pay for a funeral privately if you prefer (you may be entitled to help with costs if you are on a low income).
The first step is to contact a funeral director who will be able to guide you through the process, and help you decide whether you wish to have a service or not.