hi,
my dd was born 11 weeks ago at 28 weeks gestation.
it's been a rollercoaster ride through NICU, but she's finally home now.
I was told that she will see a cardiologist early in the new year.
she was born with pulmonary stenosis, a PDA which they attempted to close with drugs but is still open and a PFO ( which i only learned about on her discharge letter).
so i'm feeling totally confused and worried at the thought of her having heart problems.
i was wondering if there are other parents who understand how I'm feeling at the moment.
M x

Hi Maria, have been following your story on the premature births forum, and just want to say that I am so glad you have finally got your gorgeous girl home!! Congrats!!
Also wanted to let you know what I know on the heart thing - my LO, George, has Down's syndrome, but fortunately is in the 50% of people with the syndrome that hasn't got any heart defects. However, lots of his little friends have had to have surgery for various abnormalities - and they are all perfectly fine and leading normal, healthy lives. We had to see a cardiologist when George was about 2 weeks old, as they had to check his heart out - the Down's diagnosis was a complete shock, as there had been no hint of it during my pregnancy. We saw a brilliant chap who is based at the Bristol Children's hospital - I don't know where you are based, but hopefully you will have someone just as good.
Sorry I'm not much help on the medical front, but i really just wanted to reassure you that, with the right treatment and medicine to keep on top of it, it's not likely to be as major as it seems right now.

Enjoy the New Year with your gorgeous ickle girl and keep us updated on her progress!

Sarah x

Hi sarah
thanks for taking the time to replie.
George is an absolute cutie. You must be so proud of him. He's lucky not to have any heart problems as i know children with downs are more suseptible. Izzy seems to be doing really well and it's only when she's upset that she becomes wheezy and her breathing is noisy. I will just have to wait for the cardiologist appointment and hopefully get some answers.
((hugs)) for George

M x

Ah, that's good - glad she's getting there!! And don't think that the wheezy and noisy breathing is that unusual, you should have heard all the other kids coughing and spluttering when I picked George up from nursery today!!! I think that could be to do with the fact she was premmie too couldn't it? Lungs not that well developed before birth?
Keep us updated! And big hugs back (and sloppy kisses - George's speciality!) for Izzy!
Sarah x

Hello

Only just seen this - Yes, my little girl was born withe Left Isomerism, a heart condition that affects a lot of her other internal organs as well. Can I suggest that you look at the heartline forum too? lots if lovely ladies on ther, all with babas with heart issues that are always more than willing to help and advice. x x

http://www.heartline.org.uk/forums.html

Oh - and ask me any questions you like if you have any!

hi Mel,
Finally managed to register on heartline. thanks.
well, her cardiology appointment didnt go very well. the cardiologist didnt explain anything to us. Izzy cried all through the scan. We were told she has a thickened pulmonary valve, which we knew already but she didnt say how it would affect her or whether she will need an op or when she will be seen again. she didnt know if her PDA or PFO had closed as she couldnt see. i'm going to talk to her peadiatrician and see if we can have a second opinion.
M x

I think you should defo ask to see another dr. This heart lark is complicated enough to get our heads around without an unsupportive dr. Are you ok though?

Hi Maria
My daughter had a number of heart problems. She was born 2 months early & had heart surgery at 2 weeks old for a condition called TAPVD. She also had a PDA & ASD (how many acronyms can they think up!). Her PDA was corrected during her surgery. She's now doing well (21 months old) & just has a slight mitral valve tear which they manage with diuretics. We owe everything to her excellent cardiologist at Alder Hey - without him she wouldn't be here.
Her twin sister also has an enlarged pulmonary vein - not sure if that's the same as what you were describing. In our case it's nothing of concern, she just gets checked every year.

I found our paediatrician was a good person to speak to as they can explain things in a bit more of a relaxed fashion. It's difficult at the scans when your baby's crying, I can sympathise.

Hope it works out for you. Happy to chat if you have any questions.
Emma x

Heya love I know you post was added a while ago. Just wondering how you are and how things wen for your little one?

My son Zander had TOF a congenital heart defect,

He was born 31st July 9.08am 14days late weighing 10lb 3 3/4oz. He was found to have a heart murmour at his 9hr check up. We stayed over night for him to be checked sunday morning the murmour was still there. He was checked on all night. He fed 7hrs solid like clock work.

We were told we could go home sunday but to keep an eye on his colour/breathing & feeding. & await a scan/echo date in nx couple weeks & hopefully his hole would heal... (his daddy had a murmor at birth & it healed itself)

the next 2 weeks we treat him as normal just keeping exta eye out & he had no episodes so when scan date come for 19th august was expecting good news.

that wasnt the case Zander was found to have two problems with his heart we were yet again alloud home due to how well he was doing. & awaited to be referred to leeds. my world had crumbled i cryed couldnt let any1 hold him all eve.

fri morn hosp rang 11am wanting us to be at leeds for 2pm we had no car no one could help ppl \t work etc, Hosp ended up providing taxi there. We got there for 10 to 2. he was seen straight away & consultants told us his cnditoions name TETRALOGY OF FALLOTS a CHD Congenital heart defect. he has a large hole & a norrowing valve. things still go over my head talking about it.

He Is a very poorly little boy even though is pink in colur (unusual for his condition as usually blue/purple tint to skin, and also they usually dont gain weight well in his condition, Zander is Thriving)

He will need Open heart surgery after 6months old and before he is one year. I am dreading this time living in leeds for week leaving Avril our 2 1/2yr old with family for a week or so. Also dreading lil mans op and being there helpless. .

He had another echo at rotherham 1st september and will be going to leeds again Nov 25th as he moved too much in his last echo so he may have to be sedated . We had a check up with him 28th oct and his saturation etc was goiod then still.

Apart from his appointments hes had 1 lot of jabs, is a very happy baby learning well, teething badly. Growing well hes now 14lb 11half (last weds) 2nd jabs due late this fri. And he is so happy.

I just think why him, why us? hes my lil warrior i cant imagine life without him.

Sorry for my essay hope u guys are all well xxxxx
Oh yeah i got married 30th oct and he was alush pageboy

Hey Cassie

My little girl has Left Isomerism and Heterotaxy - very different to TOF but I understand the being a heart mummy bit well. Have you tried the Heartline forum? Its a forum and charity run by parents for parent of Heart children so lots of lovely understanding people to chat too. I wish I had found it sooner!! x x

Hi guys,

My son has Down's Syndrome and was born with a complete AVSD, basically meaning that the centre of his heart was just a big hole.

We didn't get a diagnosis until he was admitted to hospital at 9 weeks old with heart failure. He had a major 9 hour open heart surgery when he was 15 weeks old and was discharged from hospital 10 days later. He's now 4 1/2 years old and almost completely healthy. He will have regular cardiac follow ups for the rest of his life but we are hopeful that he'll never need to go through anything like this again.

Cassie, my son had his operation in Leeds and they are fantastic. The doctors and nurses are just amazing and his surgeon was brilliant. Ward 10 and Cardiac ITU will become like a second home to you while you are there and they will look after your little one as if he was their own.

Kids are amazingly resilient and come through these major surgeries much better than we as adults could.

If you have any questions or would like a chat please feel free to pm me. xx

Thanx you so much for you reply.

This gives me so much hope. We are off to LGI next thurs Zander has his next Echo then. Glad all is ok with your son and hes leading a normal life xx

Well what a few days. My lil man had a spell weds afternoon, didnt last long but so so scary. Blue lips and fingers, went floppy & pale and out of it for a minute or two, by the time the abulance crew got here he was happy as larry smiley, and just a little pale. He had his blood took no tears my brave boy.

He had his sats done and was given oxygen. In the amblance he was also given oxygen and when we arrived on a&e he had crowds of visitors, doctors nurses all wanting to see him (many not seen a baby with TOF a few listened to his hb.) He was given pleanty oxygen while his sats increased and then we chilled until we were transferrd to childrens ward. He was such a good boy on the ward eating his meals. smiling happy. We got told we would need to stay over night for obs. Daniel dropped me some clothes and bits off as he had work the next morn.

The next morn I asked about going home. 3 hours later a registra come to see Zander said he was waiting to hear from esleph (zanders cardiologist from leeds to ring back) She finally rang back after 1pm and said Zander would need t take pepranol (think its spelt like this) 8mls 3 times a day. But would need to have 1st course in hosp and have his bp measured/checked every hour for 3hours. His meds finally arrived 20past 3.. Dan arrived soon after finally! Luckily my sis came for few hours or i would have gone insane.

All his reports were good no bp drop and at 6.30pm we were discharged a long 26hrs + for a tired Mummy & Zander . even tho Zander slept ate and played as normal just mummy worried sick, no sleep. Hes had 4 lots meds so far doing well at home next step cardiac cath on the 14th Love u lil man xxxxxxxxxx

hi im 26 weeks pregnant and im carrying a little boy we have just found out in his right chamber of his heart its thicker walled and not alot of blood is gettin through the corect term is critical pulmonary stenosis with an intact septum im so scared cos as soon as hes born he will need surgery just wondered if there is anyone that has been through the same please help :?

Hi amandajayne

Im so sorry to hear you have been given this upsetting news. Not exactly the same but my 6 week old baby boy was last week diagnosed with hypertrophic obstructive cardiomyopathy in which the Walls and septum of the lower chambers are excessively thickened. Similarly it means his heart cannot fill with enough blood and his major vessels are getting squashed.

Unfortunately in owen's case it is inoperable, incurable and possibly not treatable. We spent all last week at the Royal Brompton hospital having tests to find out why this has happened as until they know the cause they can't give us much of a prognosis.

This has all been a huge shock as there was no indication of anything being wrong during my pregnancy. To top it off today he had his second level hearing screening as he did not pass the first one and he has to be referred for both ears. It has been very upsetting to find out there is something majorly wrong with my perfect little boy. On the plus side he is stable and gaining weight.

My emotions are all over the place st the moment. One minute I feel that everything's going to be ok and the next the future is very bleak. I'm also struggling to cope with the knock on effect this is all having on my other son who just turned 2.

If you want to chat anytime please pm me or post on here. I come on a lot as can access the site on my iPhone and check in whilst breastfeeding in the night!

hello, i am new member , i have a baby girl diagnosed left isomerism, it s a rare condition, at the moment i couldn't find someone had this condition , just to share with them , and i saw mel_71, please if u see my message just replay as we can discuss so many issues .thanks