pre natal diagnosis
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Dealing With a Difficult Diagnosis
Dealing with the shock of a difficult pre-natal diagnosis is overwhelming. Often there is pressure to make decisions quickly about medical procedures because of time constraints. On top of trying to make difficult decisions, there are the bigger questions to consider: Why did this happen? How am I going to get through this? Should we keep continue with the pregnancy or terminate? None of these questions have easy answers and it will take time before you may come to any comfortable decision.
If you have received a difficult pre-natal diagnosis for your baby, below are some things you may find helpful as you go through your journey.
Don’t make hasty decisions
Unless there is an immediate threat to the health and safety of the mother or the baby, don't feel under pressure to make decisions quickly.
Choose whom you will tell
Don't feel obliged to make the details of the diagnosis public, even to family. Carefully choose the family members and friends you will share the news with; the ones who will give you respect, time and space to consider your own feelings on the matter without pushing their own agenda.
Ask lots of questions
Ask as many questions of your doctors and medical practitioners as you need to. If you are unhappy with the response, get a second opinion. You are within your right within the public medical system to request the advice of another practitioner.
Evaluate the risks
If the doctors are suggesting or recommending certain treatment or procedures, make sure you ask them about all of the risks involved for both the mother and the baby.
Make lists of your questions
Often your mind will be swimming with so many thoughts and queries it is difficult to remember them all. Keep a notepad and pen with you all the time, especially next to your bed (as questions often tend to come to mind when trying to get to sleep) and write them down. Take your time when you meet with your doctors to go through your list and write down the answers given. This helps you to remember what they have said as it is often information overload and things can be forgotten easily.
Get help making decisions
If you are having trouble making decisions consider seeing a counsellor or psychologist to assist you in reviewing the information you have and working through your decisions in line with your own values and beliefs. You can ask your GP for a recommendation and referral to a local counsellor or psychologist with a good reputation.
Use the internet with CAUTION
There is so much information on the internet about medical matters, and you will often find that there are differing professional opinions about EVERY condition and recommendation for treatment. The internet can be a helpful tool if you feel that your doctors are not giving you accurate information, but it is very easy to be overwhelmed and feeling more confused about the decisions you have to make. You may also come across images and descriptions of your baby’s condition that are disturbing and unhelpful. Consider asking a family member or friend to do some research for you instead.
Organise some time out
If you already have children, ask a family member or friend to look after them for a few hours as often as needed so that you and your spouse can have uninterrupted time to sit and discuss the information together.
Have a plan for sharing with your children
If you do have other children, consider the amount of information you will share with them at any given point. It is important not to shut them out completely from what is going on as they will pick up on the change of tone in the home. Be as honest as you can be with them considering their age and maturity level, as well as their trustworthiness to keep information to themselves. Try not to give them misinformation or lie about the situation as this only adds to strain down the track.
Look after your spouse
Keep the lines of communication with your spouse open. Make an agreement with each other to be honest with your feelings and to let each other know if you are feeling overwhelmed or unwell. Keep listening to each other and give full thought and consideration to the views and opinions of your spouse so that you can come to a decision together. Also agree on the amount of information you will share with other family, children and friends so that you are consistent in your approach.
Consider having some photos taken
For many people faced with a difficult pre-natal diagnosis, they may be unaware of how long their child will survive after birth. Having a pregnancy photo shoot can provide some beautiful memories for later on. Also you may consider organising a photographer to come to the hospital to take photos after the baby has been born. Many of the larger hospitals will have photographers available a short notice. Although this may seem like an inappropriate thing to think about ahead of time, it is likely that you will not be in a frame of mind to organise it when events take place, and these photos will become something that you will truly cherish for the rest of your life.
Think carefully about your motivation
You may be faced with some very difficult decisions to make. These are the sorts of decisions for which there is no way to undo them down the track. As you make those decisions, examine your heart and your motives for your choices; you are the ones who have to live with the choices that you make. Here are some links and resources that may assist you when facing difficult decisions.