A letter to a newly diagnosed parent

To the parents who's just been told their unborn child has a Heart Defect:

You've probably just had an hour-long appointment with a Cardiologist while they list all the complications with your baby's Heart. Your own heart is breaking into a million pieces as you go over and over his words in your head. You didn't know it was possible to feel a pain like this. You didn't know it was possible to love another human as much as this, especially one you've still to meet.

But you have a plan, hopefully, you also have a world-class team fighting your corner. You have an agonizing few months ahead of you, counting down the days until you get to meet your baby. Normally, once a baby is born everyone breathes a sigh of relief that they're safe; but in your case - the birth is when everyone begins to worry. Please don't let this ruin your pregnancy. Don't let it steal from you the fact that you are bringing a child into the world and the amazing job your body is doing keeping that baby safe. 

You'll spend the next few weeks thinking up different scenarios, all the possible outcomes. You'll imagine what it will be like to hand your baby over to the surgeons. You'll imagine how amazing it will feel when your baby comes out of theatre and they made it. You'll even imagine the look on your surgeons face as he comes out to tell you that your baby didn't make it. You're not naive, you know that there's a possibility that the worst can happen, but don't dwell on it too much. Sometimes miracles can happen and there's no reason why a miracle won't happen for you. Some days it will feel like your taking one step forward only to take two steps back. That's all part and parcel of hospital life I'm afraid. It won't always be plain sailing. Just be patient and give them time. They won't be rushed, they will always like to remind you who's in charge - it's always them. They'll recover at their own pace and when they do finally start getting over their hurdles you'll have no doubt that it was all worth the wait.

Do as much research as you can regarding your baby's condition, the surgical procedure and find out as much as you can about what to expect in the days after surgery. Speak to your team and ask the questions. You are your child's advocate and at a time where other people have the right to make the decisions regarding your child's life and treatment, you'll feel a little more in control if you have at least some knowledge of what's going on around you. Ask the questions, whatever you're thinking. If something doesn't sit right with you then speak up

This whole experience will change your life. It will change your perspective on everything. You won't ever take anything for granted, every milestone your child reaches will be cause for celebration. Things that seem trivial to others will bring you to tears because you never thought you'd be able to witness them. You will always love that much harder, you won't be the same person that you were before the diagnosis. You've seen and felt too much pain and suffering, how could you be the same person. 

People will surprise you. The people you assumed you could count on will disappear on you. Other's you assumed wouldn't be interested will be your constant, they'll be the ones you can be frank with. They are the ones who you can't wait to share the good news with. They are the ones who'll get you through this.

Be kind to each other, be kind to yourself. You need to help each other through this, a united front. There's a tiny little human on the way who will bring you to the edge of hell and back again, that child needs you both.


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