Ventricular septal defect

[xlozalaffsx]

My little girl is 9 days old and has been diagnosed with a ventricular septal defect medium sized. She has had tests at hospital yesterday and the doctor didn’t seem too concerned which put me at ease a little at the time but since returning home I can’t stop worrying. We were advised to look out for breathlessness when feeding and weight loss. I am so worried she could just stop breathing all together.

I was just wondering if anyone has been in my position and had any advice. We have an appointment to go back in 5 weeks and I am hoping they will say it has closed by itself. A thought I know that may not happen I am trying to stay positive.

Laura

[caitlinrigby]

Hi Laura,

Obviously every case is different, but when I was born I had a ventricular septal defect. It took a while but it did eventually close itself. I had other heart issues such as a murmur and valve issues which i had surgery to correct earlier this year (I’m 18 by the way), but the VSD never caused me any issues as a baby and corrected itself. I hope that this is the case for your daughter too, I just thought I would let you know that there definitely can be good outcomes! Wishing you and your daughter all the best x

[xlozalaffsx in reply to caitlinrigby]

Thank you so much for your reply Caitlin it’s reassuring to hear a positive outcome. Take care x

[Healthyheart1]

Hi, I hope that your getting real comfort from the previous post. I'm sure our small community is thinking of you and your family x Sheena

[xlozalaffsx in reply to Healthyheart1]

Thank you Sheena that means a lot x

[Redsea]

HI, My son was born in 1990, and diagnosed with a VSD at a few days old. The worry and shock was awful, but he was our baby and we would love him whatever. He was very difficult to feed because he was so breathless. Your little sweetheart is obviously thriving, and healthy. We were told that occasionally the hole can fix it's self, the cardiology team will be vigilant with babies scans and prescribe any medications. Just try to enjoy your little darling, unfortunately I was so scared when my son was tiny and although I loved him dearly , we didn't think we would have him for long. Now the incredible advances since 1990 in paediatric cardiology is astonishing, so iam sure your sweetheart will be fine, just enjoy her because very soon she will be running rings around you, in the loveliest of ways. My son did have aVSD repair two days prior to his 11 birthday, when he was admitted to Alder Hey, he was in age 3/4 clothes four weeks post surgery he grew upwards and outwards! Putting on three stone in two/ three months! He will be 29 yrs old on 21Sept and a big healthy, and lovely young man. Good luck try not to worry iam sure she will be fine, as you all will be. Sending love and hugs to you all. Xxx

[xlozalaffsx in reply to Redsea]

Thank you so much it’s lovely to hear that your son is loving a happy healthy life. I know exactly what you mean by that worry it’s all I can think about, but will try to put it to the back of my mind until we go back in 5 weeks xx

[Redsea in reply to xlozalaffsx]

If you want to chat or are feeling stressed out please message me I will try to help, try not to worry, I know it's very hard when you have someone so very special. If you are concerned at all about your baby girl, don't mess about go to A/E if you are aware something is different with her, I was a regular in the first few months. Any concerns with you ,tell the midwife and health visitor how your feeling as it is overwhelming with a newborn and a concern that's always in your head! Stay strong enjoy your baby and take it easy make sure you get rest and help. Love and hugs.xxxx

[xlozalaffsx in reply to Redsea]

Thank you so much, I really appreciate your support xx

[NorthantsSteve]

Hi Laura. Wishing you and your family all the very best. I’m afraid I have no direct experience of having a child with this problem. Even without heart issues I was worried that they’d stopped breathing. So I can’t imagine how you feel. I’m sure it will all work out. Take care of yourself too.

[xlozalaffsx in reply to NorthantsSteve]

Thank you, I really hope so.

[Lezzers]

I don't know if it's the same thing but my sister has lived with a hole in her heart and a murmur since birth and has never had any treatment for it. She was very breathless and asthmatic when she was born, but grew out of it by the time she was 7. She's now in her 60's.

[xlozalaffsx in reply to Lezzers]

Thank you for sharing, it’s lovely to her positive stories x