Expecting a baby that will have open heart surgery when just days old

[bubalou]

Hi all,

So at my 20 weeks scan a few weeks ago the sonographer found something wrong with the babies heart.

We were sent the next day to see Foetal cardiac specialists at St George's hosp in London. After 3 hours of tests and ultrasounds etc we were told that baby Bubalou has TGA. Transposition of the great arteries which in layman's terms means 2 of the 'pumps / tubes' in his heart are the wrong way round.

This doesn't effect him for now as he gets oxygen from me but it will when he is born. I will not be having a simple labour at my local midwife unit. He will need to be born at Chelsea & Westminster hosp - induced at around 37-38 weeks. When he is born he will be taken straight away and transported to the royal Brompton nearby. He will need medication to keep his oxygen circulating whilst he stabilises over the first few days. When he is about 4/5 days old depending on how he's doing - he will have open heart surgery to 'switch' the arteries.

So a few weeks later and it still hasn't quite sunk in. I'm feeling anxious about a lot of things. I have a 6 year old DS. When baby is born I will be in London for 3-4 weeks with him before he is well enough to come home.

It's a lot to prepare for and I'm freaking myself out about lots of little things whilst trying to keep a brave face on for everyone else.

Has anybody else been expecting a baby they know will have medical problems when born and how can you help to prepare yourself, your children and your life for such a big event?

Hi bubalou. I've not been through this myself but I couldn't not post as I know two babies who've had the same condition. My now 4 and a half year old niece and one of my good friends' babies have both had TGA and are now completely fine. My niece is a twin and unless you know, you couldn't work out which one had the operation. my friends baby was operated on at the same place you'll be, last November, and at his 8 week post op check up they were told he's now basically a normal baby. They were only in hospital for about 3 weeks as with the op being done so soon after birth, the baby often recovers quickly.
my friend has 2 older kids, who were at home with grandma while this was going on. The mum and dad took turns to have a night at home so it wasn't like they didn't see mum for 3 weeks, and they were allowed to visit. I know they were able to explain quite a bit to their oldest, who's now just 5, so I would've thought 6 would be a good age to know what's happening.
I think the hospital has a support group, and they were able to visit in advance.
hope that helps a bit and someone who knows more well be along soon. (And if my friend happens across this she'll turn a blind eye to me being on the pregnancy board! )

Just seen this. I can imagine that it is still so much for you to take in even weeks later.

Are there any support groups or charities that can arm you with some more information and be there to answer your questions?

Hugs xx

Hi flight and tranquility.

Thank you for both for replying.

Yes we've been given some details of places and charities we can get in touch. I think like I said it's still a lot to take in.

I'm so chilled out usually but this has really knocked me. I know stuff just happens to some people but I'm only 28, very healthy, don't drink or smoke. Of course this doesn't mean I deserve to be excluded from these things - it's just that my first pregnancy with DS was sooo straight forward and so was he as a baby I think it's really shaken me.

It's hard because I have no idea how it's going to be, what's going to happen or how he is going to be.

I'm just really scared.

The really great news is that the operation has a great success rate and apparently of all the heart things to get this is one of the 'better' ones .

Haha, should have seen my face when the consultant told me that!

It's nice to hear about others that have babies that are now ok.

I haven't got a lot of advice to give as I personally haven't been in your situation but I just wanted to give you and your baby best wishes!
Of course it will be a lot to take in, just take each day as it comes. I'm sure you'll be strong for you and your baby when the time comes! X

Hi OP, I have a friend whose son had what sounds like the same thing - two blood vessels in his heart were the wrong way round and he had an operation when he was a few days old.

They were so worried but he was fine, the operation was a success and he is now a completely healthy 8 year old.

Lots of hugs for you - I think the weeks of waiting beforehand are just hard as all you can do is wait, but I'm sure your baby will be fine

bubalou I have no personal experience of this (although my DS was prem and in special care for 2 weeks, so I know what it is like to have baby whisked off after birth) but I wanted to tell you about friends of mine whose DS had TGA - as far as I know, in his case the condition wasn't picked up prior to birth, and he was whisked off to the Brompton ASAP. It was obviously a very scary few days for them, but the surgery went well and their DS is now 1 with no lasting issues.
Of course we all wish we could have a nice "normal" birth, but take heart that at least you have lots of warning and time to mentally prepare yourself. Ask if you can visit the Neonatal unit at C&W / the Brompton and speak to the doctors who will care for your baby. Familiarise yourself with the surroundings. Ask what support they give to parents - will you be "rooming in" at the hospital, or will they be able to give you accommodation in a Ronald McDonald type house? If you want to breastfeed, will they be able to support you and provide you with hospital pumping equipment?
Have a look at BLISS - they support parents of sick as well as early babies, and have lots of advice and information. Above all else, don't feel alone - it is important to have someone to talk to if you want. I met a very kind nurse on the neonatal ward who chatted to me and realised I wasn't coping, and referred me on to the unit's psychologist - without talking to her, I wouldn't have got the support I needed when I was really struggling to deal with everything that had happened, a month or two down the line.

Sending best wishes to you and your family I'm sure your little one will be strong

Hi there. DS2 was diagnosed at his 20 week scan with a condition requiring immediate attention after birth (different condition), I also had him at Chelsea and Westminster.

You really could not be in better hands.

We asked to meet the team who would be treating him, were introduced to his consultant etc but as we lived in London we were able to transfer our care.

If it would help/you are able perhaps you could visit and do the same ahead of delivery?

I was very apprehensive through the pregnancy, it was stressful - like you an out of the blue diagnosis, I was mid 20s with no risk factors.

Wishing you all the best. You are in good hands.

My DS1 was 5, by the way. We explained his little brother was poorly and would need to stay in hospital for a little while after he was born. DS1 drew pictures for us to hang around the incubator and sang a special song to my bump every night (twinkle twinkle little star). When DS2 was born and DS1 was able to visit he sang the song and DS2 responded! It is one of DS1's most cherished memories, he remembers that not the wires and our stress.

Thank you so much for the responses.

I will never let people complain about the NHS again because the team at St George's have been amazing and yes our 'co ordinator' so to speak has mentioned a few of things that some of you have mentioned about breast feeding, accommodation etc.

However we had just been told the news and I don't think it all quite sank in so we will probably go through the information again when we see her.

They've been amazing and I know the support is there. Silly as it sounds I just wanted to kind of hear from people as my prenatal board - they are all amazing but I feel like I will drag them down and don't want to vent or worry them about their own babies.

They are all having their 20 week scans and coming back healthy which is obviously 100 percent what I want but it hurts a little every time I see another post saying 'thank god everything perfect and healthy'.

On our Facebook group I love being able to speak to them all but they are talking about what to pack in hospital bags, home births etc and I feel so now all those things are unsure / so different for me. I am a planner but I feel anxious about buy anything now.

God I sound so sorry for myself. He will be fine I know and there are people like someone said who get no warning about this and people whose babies have far worse.

This blogger's baby had surgery after birth. I know she found support on US forums.

sewliberated.typepad.com/sew_liberated/faq.html

Hi Bubalou, I just stumbled across your thread. I have a son with TGA, like yours he was diagnosed at his 20 week scan. How are things going now? I struggled a lot in late pregnancy, dealing with the information and the emotional side of things, and found it hard to find the right people to talk to. Have you found the Heartline forum? There are also some Facebook groups specifically for the families of ' heart babies'. I am quite happy to talk to you on pm if you have any questions i may be able to help with. X

My old neighbour's

Start again... My old neighbour's child was born with this exact same condition, exact same scenario 8 years ago! He's doing great. No advice, but just from knowing this little boy and also having a cousin who works as a paediatric cardiology nurse who has dealt with lots of TGA patients, you're baby will be in great hands. Babies get through this and live happy, healthy lives.

I teach a boy who had this when he was born, he is absolutely fine now and 15 years old. Think it is a well rehearsed surgery but can understand your worry. They would have done it loads of times and can do things like that quite quickly nowadays.

Hi.
My DD was born last year with an AVSD. She managed 12 weeks before she had OH surgery at GOSH.
I won't lie to you, it's pretty scary, although the 'before' was worse than the 'after'!
BUT, the cardiologists are AMAZING! They do these kind of repairs all the time! They know exactly what they're doing and the nursing staff are just outstanding! And these tiny humans recover amazingly quickly. DD was home in 6 days!
The waiting is most definitely the worst part of the whole thing. If you'd like to PM me with any questions, or just for a chat, please feel free.