Atria Septal Defect

[akcher]

I had my 25th week scan and it showed my girl having a heart defect. The top chambers of the heart wall might have a hole. From what I read the seriousness of this depends on how big the hole is. Big holes may require surgery and small holes will require close monitoring. Holes in the walls of the heart wall may close on their own within 1 yr of the child's life. This happens in 1 in 100 babies and higher risk in multiples and girls. I am being referred to a fetal cardiologist and will get a more detailed scan in a couple weeks.

 

[Mickeyc]

Hi,

I have just seen your post. My baby was born with Ventricular septal defect, it was not detected before she was born even though we had 2 cardic scans during pregnancy.

Unfortunately Sophie's hole was very large and she had open heart cardiac repair surgery at 12 weeks old.She struggled in her first 3 months, did not feed, had medication and high calorie formula milk to help her gain weight(she is 10lb now!!) she is 15 weeks old now and is doing great since her surgery. She spent 4 days in PICU and a further 3 on the ward and was back home after a week, she has a scar down her chest from her neck to her tummy but apart from that you would not know that there had been anythig wrong with her. Her feeding and breathing are so much better.

I cant deny it was hard at the time but if the worst happens and your baby girl does need surgery I just wanted to reassure you that it is not nearly as bad as you imagine. Babies are tough and they heal so quickly.

I hope all goes well and like you say the likelihood is that the hole will close by itself.

Take care and good luck. Feel free to ask me any questions!

 

[MrsP]

Hi

My DD was born with both an ASD & a VSD, this was detected at her 6 week check first as a murmur and then later confirmed as two holes in her heart. Eleanor was about 4 months when she went to Great Ormond Street hospital to have them repaired.

She also was on medications to reduce the fluids from her lungs, high calorie milk and suppliments to help her weight gain. She was in inrensive care for 24 hours and then on high dependancy for a further 24 and then we were home. Well we went in Tuesday morning and was home Thursday night.

When I first told people, people played it down and how they knew this person and they knew that person but it didn't take the fact away my baby was sick. At the time I didn't think she looked it only until I look back on pictures.

She has a 4 inch scar on her chest whihc is extremely neat and tidy and by the time she has boobs you'd never see it and to look at her you'd never know.

I was lucky, my cousin works in ITU at Birminghams childrens hospital so she was able to give me the heads up.

If your baby girl does have to have it, there is just one piece of advice I can give you and that is when you see your LO laying there after the op, look past the things helping her at that time and just look for your baby girl and she'll be right there smiling back at you.

ITs amazing how quickly they bounce back, I think it effected my husband and I worse than her.

I wish you luck hon xxxx

 

[Mickeyc]

Hi Mrs P

Glad your LO is doing well.

Its hard isnt it? I know what you mean about it being tougher for you than for them. Sophie is a little superstar. If I had been through what she has been through. I would not have coped so well!! It amazes me how tough our little babies are!

I look back at pictures of Sophie now too and it really hits me how sick she was.

Just one quick question. Do you put anything on the scar? I massage in baby oil after her bath each night but I'm not sure if I should be putting anything else on it to help it fade?

to you and your brave little girl

 

[MrsP]

Hi Mrs P

Glad your LO is doing well.

Its hard isnt it? I know what you mean about it being tougher for you than for them. Sophie is a little superstar. If I had been through what she has been through. I would not have coped so well!! It amazes me how tough our little babies are!

I look back at pictures of Sophie now too and it really hits me how sick she was.

Just one quick question. Do you put anything on the scar? I massage in baby oil after her bath each night but I'm not sure if I should be putting anything else on it to help it fade?

to you and your brave little girl

Hi hon,

Glad to hear Sophie is doing so well. Its amazin isn't it? No I don't but Eleanor's has faded so much and they did such a fantastic job, extremly neat and tidy. Eleanor was 4 months when she had hers done, how old was Sophie?

Also where did she have it done?

We found a lump this week on Eleanor near where her chest drain was, turns out its a hernia caused from the operation. Hopefully it will sort its self if not more surgery for my poor baby.

How much more will her little body take? x

 

[Mickeyc]

Sophie was 13 weeks old when she had her surgery, that was 3 months ago. The scar is really neat but it is still quite red in parts. I guess it will fade over time though.

Soph had her surgery at the John radcliffe hospital in Oxford. they were amazing.

So sorry to hear about the hernia. How long ago did Eleanor have her op? I hope it sorts itself out hon, the last thing you both want is more surgery, she has been through enough!

Take care

 

[MrsP]

Eleanor's all of a sudden started to fade, but to be honest I think the sun helped a lot. We went to Egypt when she was 7 months and it really took the redness down. I'll try and get a pic later and will post it on here for you to see.

Eleanor had hers March 10th 09, so nearly a year ago now. Still under the diaetician and due an appointment with the consultant in July although with the hernia and things going to see if he'll bring it forward.

Don't know about you but we wasnt allowed to pick Eleanor up from under her arms from 4/5 months duw to the healing, it was quite difficult you dont realise how much you lift them that way do you.

 

[MrsP]

Found some pics.

Eleanor 6 weeks - pre op
Day after op
about 6 weeks after op
Eleanor 7 months so about 3 1/2 months after
Eleanor at 11 months so 7 months after

 

[Mickeyc]

Thanks for the pics, Eleanor looks amazing. she has healed so well.

She is sooooo gorgeous too!

It is funny what you get used to isnt it. I found it really difficult not to lift Soph under her arms at first. but she soon let me know if I forgot!!

Sophie is still on the high calorie milk (SMA high energy) as her weight gain has not been that great since the op but otherwise all is well. The consultant said there was a very small hole still there but he fully expected it to close by itself.We have to go back in March for a check so fingers crosed that all is well.

I hope Eleanor is well and that the hernia does not cause any problems.

Thanks so much for posting the pictures

 

[MrsP]

Eleanors weight gain is rubbish too, she weighs under 19lb and is on the 8th centile. We used to have to give her a thing called maxijul which you put in with th formula milk, was extra calories I think to bring the weight up.

when Eleanor had her first check up there was still a bit of a leak but by the time we went back for the next one, where she had grown it had closed it self. Now for sure it has gone.