Parents of children with heart problems?

Question

This is my first pregnancy, i am 18.

My unborn child has just been diagnosed with Double Outlet Right Ventricle, similar to Tetrology of Fallot. i'm curious as to what your child's life is like. how you coped and what to expect in infancy. they told me he will need surgery at 3- 6 months unless he turns blue before then and that ill need to learn CPR. I'm really scared for him, any relief?

Answer 1

Try to remain calm, as hard as that is it's best for you and baby to remain calm, sound like you do have a rough hike ahead of you, but you will learn as you go along and find ways to manage things, When you first met your lil one you will summon up the most amazing things ever in form of love for your child you will find coping skills that only time can bring. Only thing I can suggest is ASK, if in doubt on anything the doctor's say, ask again until you do understand, don't be afraid that you will sound dumb or anything if you have to ask 20 times, that's what they are there for, they have the training you don't and aren't expected to understand all the technical mumbo jumbo, so ask for all the info you can so you can understand exactly what is going on.

My 1st daughter had a seizure, turned blue and stopped breathing when she was 4 weeks old whilst giving her a bath, I had to resusitate her and she was rushed to hopital (in another town) by ambulance, where she spent weeks in Infant ICU trying to find out why it happened (which also kept happening in hospital), after spending weeks in there (I never left her side) they sent us home only to be called up and told to rush back straight away they found something, of course I freaked out. anyways, they ran more scans, ECG's and other tests again, turns out she does have a congential heart defect they said to refer to a heart variation where one side is abnormally larger then other (the most severe they had seen in one so young for some time) and due to the sizing the heart occassionally doesn't perform as it should in pumping the blood and oxygen around her body hence why she turned blue (not enough oxygen) and why she would have a seizure and stop breathing. unfortunately there is nothing that can be done for it and they said hopefully time will improve things, they were right, as she grew the seizures etc lessened thank goodness, last one happened 2 yrs ago and counting. I know what signs to look for now and know what to do if she does develope signs of another seizure.

Doctor's are there to help you and try asking them if there is any organisations there that can help you further with counselling, you should give it a try it will probably help. Perhaps even ask if they know of any support groups where you can met other's in the same boat..

((Hugs)) have faith it will all work out fine...

Answer 2

Listen-don't be afraid. There is no one that can do more than a mother. You will be surprised how much you learn and grow in the process of having to deal with this baby and situation. There are so many resources and so much info today for anyone who wants it. Take a deep breath and say "I can do this!" Good luck!

Answer 3

i dont have a child with a heart condition but i do have some suggestions.

have a look around on baby message boards for groups/forums for babies/kids with heart defects.  i think you will find that most mums there will be able to help you and give you more understandable information then any medical websites.

they can also offer support and it would be nice to know your not in this alone, that others understand how you feel

i wish you and your child all the best.