interrupted aortic arch

[Staffy1234]

Today myself and my partner discovered our baby has an interrupted aortic arch and ventricular septal defect. I am 21 weeks pregnant and this came as a complete shock to us. Has anyone experienced this and is willing to share their story?

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

It must have been such a shock to learn that your unborn baby has a a congenital heart problem.

Antenatal screening does help the doctors and midwives prepare for the birth of your baby.

Have you been referred to a specialist children's heart centre?

There are several throughout the country.

The BHF has some information about interrupted aortic arch in this link.

bhf.org.uk/informationsuppo...

The Children's Heart Federation has a helpline line and they will hopefully be able to put you in touch with other parents.

chfed.org.uk/

There is also Tiny Tickers another support group for families with babies born with heart problems.

tinytickers.org/

I wish you all the very best.

[MummaSoap]

Hi Staffy

I don’t have any personal experience of your situation and I can’t imagine what you and your partner are currently going through, it must be so difficult.

I appreciate that you have been given information that you weren’t prepared to hear and it must be such a worrying time for you both but it might be worth ringing your midwife or obstetrician with a list of questions.

My friend had to make a difficult decision when she was told that her baby boy had a large hole in his heart and the professionals didn’t think he would survive birth. I certainly don’t want to upset or frighten you but I do remember her saying that she wished she had asked more questions to fully understand as much as she possibly could have. I would say write everything down, even if you don’t end up asking that question for whatever reason, at least you have got it out of your head and somewhere that you can see it and rationalise it if needed.

Sending best wishes to you and your family, thinking of you all and especially little one.

Take care

Soap 🧼

[Rainfern]

Sending a big lot of courage to you. In the days before such refined screening heart defects were not identified until birth. This meant many babies went full term but were unable to withstand the trauma of birth. These days we can make better choices , be prepared, have a Caesarian if necessary, and learn what surgical procedures might be available. I grew up with a couple of holes in the heart and had this successfully operated on as a teenager. I’m sorry I have no knowledge of the condition you describe, but as others have said, have your questions ready.

[Livewiref9]

Hi Staffy1234Sorry to read about your terrible shock. We suffered similarly when our son was diagnosed at birth with Tetralogy of Fallot (which included the ventricular septal defect) and a coarctation of the aorta. He had the coarctation repaired at two days old and the rest done at nine months.

That was 42 years ago and he has run several London marathons (in aid of the BHF) and competes in Ironman triathlons. We hope that you can take something positive from our story at this worrying time and bearing in mind the great advances medical science and procedures have made in that time, we wish you all well.

Best wishes to you all

Livewire