congenital heart disease

M

mumsy

Registered User
My baby was born with a hole in his heart and mild pulmonary stenosis. After the initial shock and tears, I researched further and was a little comforted to find out it is quite common (1 in 145 babies have heart defect).

I am told he will need a one-off operation to correct the problem though we do not know when this will be but probably between 1-3 years old.

Have any other parents experienced this and what can I expect after the surgery?

Baby is 5 months old and has no symptoms/difficulties and appears healthy.
However he has not learned how to fall asleep on his own and still wakes up to 4 times for night feeds - however I am reluctant to let him cry it out in case it affects his condition. Any advice? Thanks
 
I don?t know how helpful my story will be as it was never suggested that I have surgery so my heart complaint can?t be as bad as your baby?s. At a check up when I was a few weeks old the doctor diagnosed that I had a hole in my heart and sent me for a check up in the main teaching hospital in the city I lived. I carried on having check ups until I was 21 years old and the doctor then asked me to report back to him if I had any symptoms ? e.g. palpitations. Otherwise I didn?t need to keep going back for the bi-annual check ups.

I grew up knowing this but it didn?t stop me doing anything I wanted to. I wasn?t allowed to do cross country running when at school ? I was the envy of my school friends! Also when I gave birth to my babies I was given antibiotics because of my heart.

My mother told me that as a baby I slept a lot ? much more than my siblings. In fact they used to joke that I didn?t wake up for the first three months. This didn?t mean that I slept through the night though. Apparently I woke up a lot to have many small feeds but always slept in between.

As a child I also needed lots of sleep. I used to go to bed at the same time as my younger brother and it was only about 10 years ago (we are both in our 40s now) that I discovered that once I was asleep my parents let my brother stay up for another hour or two.

My mother always thought that my need for so much sleep was linked with the heart problems but I don?t think that she had anything other than a mother?s instinct to back this up.

Best wishes,
Barb
 
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Hi Mumsy,

Sorry to hear about your baby. My heart goes out to you. My niece had the same condition. As a baby, she didn't show any particular signs of having this condition. Although my sis in law was also very nervous about letting her cry too long b/c of her condition. She had the operation at one year old and now she's a healthy 6 year old. She has a normal life as any other child. The only difference is that when she gets older then she needs to take medication only before she visits the dentists...i think it was to protect her from infection. Other than this, everything is the same. I hope this will make you feel better. All the best to you and your baby!
 
Thank you barbwong and Avi for sharing your stories - were the conditions diagnosed overseas or in HK?

I've been told of some cases in the UK which did not require surgery - either the hole was too small or it eventually closed as the baby got older. One is now 35years old and still has the hole but needs to go for checkups every 3 years.

My sister in law knows someone whose baby had the surgery in HK at 1years old and is now a healthy teenager and no longer needs checkups.

Of course I realise each case is different. The chinese doctors at Grantham Hospital say it is better to have the surgery earlier to prevent any future problems and ensure the child can develop properly and lead a full life.

I am still debating whether he should be treated in UK or HK. Are there any expat paediatric cardiologists in HK?
 
hi mumsy, my niece lives in the US. She had her operation there also. I'm not sure how the paedeatric surgeons are here but if they are at the same levels of the other doctors i've seen (gp, obgyn, opthamolgists, paediatrics) i'd say that hong kong doctors are definitely one of the highest quality standard I;ve experienced.
 
I have an acquaintance here in HK whose child had a very severe form of this problem. Almost stopped breathing when 1 day old.... was told to plan to have the operation when the baby was a toddler. Rushed to the emergency room w/ baby having problems at about 8 weeks, and then surgery was performed a day or two later.

The child is now a happy and healthy pre-schooler.

I have another friend (but in USA) whose son had a different problem. Was told eventually he would need a pace-maker. Decided to do it earlier rather than later (because she didn't want his growth stunted, which might be a dide effect of waiting) and he's now a strong and happy primary school student.

Re: "Expat paediatric cardiologist" - I agree w/ Avi: the levels of skill and training of doctors here in HK are certainly equal to those in the UK, Australia, etc.
 
Dear mumsy,

I can truly understand your problem..My cousin's child was diagnosed to behaving the very same problem and she underwent a surgery when she was just about 2+.I guess having an early correction is essential as they have less awareness aboutthe issue then.On my niece lemme add that she is a very pretty,healthy and bright girl of 9 now and I don't think sh eis under any kind of medication now..So stay relaxed and get all set for teh surgery as this can help her to grow soon to a normal child..Cheers!!!
 
My husband had something similar. They waited until he was 18 months old before operating.

He has a huge scar right across his chest from the operation to remind him, but a doctor said recently there would be next to nothing if it was done today.

His mum said he had a huge surge of energy after the operation, as he could run and breath properly for the first time ever. I also think she had him wrapped in cotton wool before that - like you not wanting your baby to cry.

That business about not falling asleep on his own is a separate issue and is sorted through "control crying" technique. You will wonder why you didn't do it sooner. You should check your worries with your cardiologist just for peace of mind.

The only other thing about the heart surgery is that he has to take a course of anti-biotics when he has any dental work done. Not sure why.

Bet your baby is beautiful?

mumsy said:
My baby was born with a hole in his heart and mild pulmonary stenosis. After the initial shock and tears, I researched further and was a little comforted to find out it is quite common (1 in 145 babies have heart defect).

I am told he will need a one-off operation to correct the problem though we do not know when this will be but probably between 1-3 years old.

Have any other parents experienced this and what can I expect after the surgery?

Baby is 5 months old and has no symptoms/difficulties and appears healthy.
However he has not learned how to fall asleep on his own and still wakes up to 4 times for night feeds - however I am reluctant to let him cry it out in case it affects his condition. Any advice? Thanks
Click to expand...
 
Hole in the Heart

Hi

A colleague of mine told me about your situation having read about it on geobaby.

My daughter was diagnosed with a hole in the heart at 10 days old. Like you I was devasted. She was always healthy, but remained a little underweight. This didn't stop her playing football and rugby. She has always been full of energy. She is now 7.

In April last year she underwent open heart surgery at Grantham Hospital and has never looked back. Within 6 months she had gained 7kg. She was playing football and swimming 15 lengths of the pool 3 weeks after the op. I have nothing but praise for the staff and the service at Grantham Hospital. They did a fabulous job and I would thoroughly recommend anyone with similar problems to go there.

We were originally in the private system, but a number of people including expat doctors advised us to go public. We also had a second opinion in the Uk and they totally agreed with everything we were told in HK and actually told us we were in the best place to have the operation.

I really understand the dilema you are going through and if I can be of any help I would be willing to speak to you directly.
 
I totall undertand the pain you are going through, especially when the surgery date is getting closer one day by one day. My son has a very serious herat problem call tetrology of fallot, a hole, and 3 other major problem of the heart. He had the open heart operation on Sept 05 and he is recovering very very well now. I saw many other babies are also there at Grantham hospital that did the hole reparing surgery and all of them are recovering very well after 3 days. You will be quite worry the day before and the day after the surgery, but after the 3rd day, all mothers are smiling there. Don't worry, the doctors at Grantham are doing the same surgery everyday and they are pros. At least it is a sickness that can be repaired , right? We are the parent, and we must go through this with our child, bravely, togheter, although I cried like crazy when my boy enter the operation room, but looking back, it is not as terrible. So, don't worry
 
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