Please some advice/help/info regarding heart problems

[preemie12]

Hi everyone,

I need some information regarding heart defects (holes in the heart) and i'm hoping someone can point me in the right direction or offer some help or advice regarding this.

Some info - my preemie boy was born 12 days back at 30W6D. In the first few days after birth they heard a murmur in the heart. But it had disappeared for a cpl of days, only to reappear a few days back. Our doctor recommended a 3 day course of ibuporofen, even though this medication harms the kidney, and the kidney was already damaged. But the doctor recommended this as she said the holes in my baby's heart needed to close and this medication was necessary.

The 3 day course is over, but the murmur is still there. It has improved only slightly. For technical details - my baby has an ASD hole but this is v. small and she is not worried about it. Another hole is a PDA hole, in moderate size approx 2.7mm. The hole which is the most worrying is fairly large - VSD hole - 3.5x6.1mm. They are going to perform an ultrasound, in 2 days, and our doctor says that if the holes have not disappeared, they are going to operate on our baby.

Now while I know my doctor knows what she is doing, I cannot help but think if an operation is necessary. I've read so many cases of the holes closing on their own, or with some medication later on. Then is it necessary to perform this operation now? I mentioned my concerns to the doctor, but it seems she wants to do the operation if the ultrasound indicates the holes are still there. At the end of the day it IS an operation, and if there is a chance the holes will heal on their own, why not wait? Why not try medicine again? I believe an operation should be the last resort.

If anyone has any information or been through a similar situation I would really appreciate hearing from you. Thanks in advance and sorry for the long post...

 

[Marleysgirl]

Haven't been through this myself, sorry.

I believe the PDA causes a strain on the heart, but that the drugs used to treat it comes with a very high risk of haemorrhaging. It could be that with your baby's other problems, they don't want to risk the latter.

Question your doctor! They don't mind having to explain themselves and their decisions (well, mine certainly didn't).

 

[25weeker]

Sorry can't help with the other holes but my daughter had a PDA which was successfully treated with medication. Anything above 2 in a PDA is categorised as large and in the hospital we were in they treated all large PDA's.

The PDA surgery was actually done in our Nicu and over 6 weeks there was at least 3 carried out.

I hope your next ultrasound brings better news.

 

[Agiboma]

My son had pda surgery 6 weeks after he was born, the surgery is pretty routine, so please dont worry about it. I really wanted my son to have the surgery because his pda was 3.5mm and also the medication is pretty rough on the stomach and that can cause major complication's so i though surgery was our best option and it worked out well for us a few days after the surgery my son went on cpac then low flow then he was off all breathing support.

 

[preemie12]

Thanks for the info... We'll find out on Monday or Tuesday when echo is done by cardiologist. I hope the holes have closed or at the least become smaller. I know it's quite routine operation, but doing the PDA and vsd together, and that too on a 2 week baby doesn't seem right.. But if there isn't an alternative..

Thx guys, will see what the doc says on Monday.. And by then hope I can get more info abt if this operation is such a good idea so early on..

 

[sherryberry79]

Hi,

I'm sorry I too can only comment on the PDA side of things.
My daughter (26+3) had two courses of the meds to close the PDA without any success. She was operated on when she was around two and a half months old, still weighing less than 3lbs. She was transferred to Alder Hay Hospital for the op and the surgeon said that he had never seen such a large PDA on such a tiny baby. They usually use one clip to close it, but in her case he had to use two.
She came back to our local hospital the same day, and the rate at which she improved was astonishing. The surgeon said that as soon as he closed the PDA he could see an immediate improvement in her circulation. Within 48hrs she was offf the ventilator that she had been on for 2.5 months (she did manage about a week on Cpap prior to the op, but her little body was working too hard so she was intubated again) Her weight gain which previously had been so slow, (hence her still being under three pounds at the time of the op at 2.5 months old) began to improve massively too. Basically the operation was a massive turning point for her. I can honestly say that if I had known then what I know now about what a difference it would make to her recovery I would have pushed for the op sooner.
Sorry I can't be of any help with the other issues your LO has with his heart, I am sure the doctors will talk you through all the options that are available right now, let us know how your little one gets on please!

 

[preemie12]

The cardiologist came by, and even though we couldn't meet him, the reports are in. The good news is the PDA has closed, so one less thing to worry about.

The bad news is the VSD is fairly large at 4x6mm. Now while I've read and found out how the PDA is common in preemies.. I can't find anything about VSD of this size being common, or about medicines, or, if surgery needs to be done, risks involved. I can't seem to find anyone whose had this surgery on their preemie either. It's damn worrying, esp the size. I have an appointment with the doctor tomorrow, then let's see what happens... Heart surgery is scary.

 

[freddiesmum]

heart surgery is very scary but very successful and fairly routine. my niece had heart surgery at 3months old, she wasnt premature but all the same, i believe for the surgery they go in through the shoulder blades on the back. im sorry i cant really help but i wish, you, your wife and your little one all the strength you need to get through this x

 

[clairec81]

Hi there, my LO had PDA surgery at 11 1/2 months, they thought the PDA had closed and only discovered that a. it hadn't and b. it was very large (8mm), in a routine check. She had surgery 2 days after the echo confirmed it and it was very scary, especially being back with buzzers and bells. It is a very long story and i'm not sure how helpful it would be to you as i just read above that your LO's PDA has closed but i'd be happy to go into detail. The one thing i think i should tell you is that it was amazing how quickly she recovered, they truly are wee fighters.

 

[preemie12]

Thanks for all the help everyone. We met the doctor today and the cardiologist said that while the VSD is still there and fairly large, they have decided not to operate on our baby and will deal with it later when the baby is bigger.

I really hope and pray that this hole will close up on its own.

 

[Marleysgirl]

Just spotted there's a thread started over in the Special Needs section about another baby with a substantial VSD, they've been offered surgery. It's here: https://www.babyandbump.com/special-needs/657970-downs-baby-large-vsd.html

I'm going to cross-reference your preemie thread into there too, the two of you might want to talk!

 

[gracesmumxx]

hi my 12wk old baby was diagnosed with a large VSD at birth approx 5-6mm - its resulted in pulminary hypertension as its putting such a strain on her lungs. Basically the way its been explained to me is that instead of high and low pressure in the bottom chambers hers is now just high pressure so its pumping loads of high pressure blood to her lungs - having her on diuretics has helped a lot. She hasnt got the energy to feed so is NG fed and is struggling to be bothered to do anything really - shes still like a new born. She'll be having her op in a few weeks at Alder Hey. I totally understand your worries and know exactly how scared you must be. The last 12 weeks we have been constantly on pins waiting for signs of her deteriorating and have made full use of the open access on the childrens ward - think theyre sick of us now I know the surgery sounds scary but to be honest i just want it over with now cos over the last few weeks iv watched her become more n more weary n just want her to be healthy now. Sending hugs x x

 

[gracesmumxx]

ps im the one with the post 'downs baby large VSD'.

 

[clairec81]

Hi there gracesmumxx, so sorry to hijack thread but hoped with your experience you'd be able to offer me some advice. I replied to this thread with the experience i had of my LO having a large pda and going through surgery in Novemeber. We have since been back and forth to cardiologist doing various echos and ecg's to check for possible pulmonary hypertension due to it going undiagnosed. So far all tests are ok but the cant measure the pressures in her lungs via echo so plan to do a cardiac catheter next month. If you have any info i'd be really grateful to hear it. Thanks and sorry again to interrupt, just haven't been able to find anyone to talk to about pulmonary hypertension!

 

[gracesmumxx]

hi claire - to be honest im kinda in the dark about the hypertension myself cos everytime its mentioned they brush it aside n says its related to the defect and will correct itself when hole is repaired. From what i can gather its that their little lungs are going like the clappers - which can eventually cause damage to the lungs (i think it means for years not just months). When i googled it (about 100 times a day) its scared the hell of me some of things it was saying. I asked the neonatal nurses rather weepily one day if it was life threatening and they assured me it wasnt n that they can give them meds to stabalise the pressure - this reassured me a lot to the point where i stopped googling it daily. For me, when they said it wasnt life threatening I felt much much better. Sorry i cant be of more help with the PHT - i think im absorbing info on a need to know basis at the moment. How was your LO surgery - how long was she in and how did you cope with it.

 

[clairec81]

Hi thanks very much for info, to be honest i've had mixed reports about PHT and our cardiologist scares me! With regards to Erin's surgery it was very scary at first, i've probably never posted just how scary but i guess if someone was able to pre-warn me i'd have been prepared - it was just seeing her back on a ventilator and so helpless but this time she was mobile so even worse than neonatal! It sounds horrendous but it was unbelievable just how quickly she recovered, 2 days I.C.U, 2 days High dep and then into a ward and home. She was a complete star! You'd never guess now she's had surgery but it will stay with me forever, i guess that's just being a mum eh!

 

[vermeil]

Hello again Preemie12! My little guy had the PDA open at birth like so many small preemies. But within 24 hours the pressure in his lungs was so high one of then ruptured and he had hemorraging. I won't go into the awful details but we came close to losing him that first day. Was very scary. Luckily after that he responded to the medication (essentially a form of advil) and it closed on its own.

If you're feeling brave there's an actual PDA surgery on youtube - lasts about 10 minutes and the doctor explains everything he does. I know your beautiful baby no longer has her PDA open (HURRAY!) but still has a VSD, still perhaps it can reassure you just how routine such operations are

 

[preemie12]

hi my 12wk old baby was diagnosed with a large VSD at birth approx 5-6mm - its resulted in pulminary hypertension as its putting such a strain on her lungs. Basically the way its been explained to me is that instead of high and low pressure in the bottom chambers hers is now just high pressure so its pumping loads of high pressure blood to her lungs - having her on diuretics has helped a lot. She hasnt got the energy to feed so is NG fed and is struggling to be bothered to do anything really - shes still like a new born. She'll be having her op in a few weeks at Alder Hey. I totally understand your worries and know exactly how scared you must be. The last 12 weeks we have been constantly on pins waiting for signs of her deteriorating and have made full use of the open access on the childrens ward - think theyre sick of us now I know the surgery sounds scary but to be honest i just want it over with now cos over the last few weeks iv watched her become more n more weary n just want her to be healthy now. Sending hugs x x

hi gacesmum.. thanks for posting. I read your post courtesy of marleysgirl. My baby is a premature one, born at 30w6d and now at the 18 day mark. He has a large VSD 4x6mm. His breathing is definately quite strenuous on him, but he has shown some improvement. I have no idea when and if they will do the operation for his VSD, all I know its not just now. I can totally understand how you wish for the operation to happen sooner, so that your baby can recover quickly. I've heard of amazing recovery stories, and almost immediately after the operation. My best wishes and prayers are with you. It will all work out in the end, that's one thing I truly believe in.

 

[preemie12]

Hi thanks very much for info, to be honest i've had mixed reports about PHT and our cardiologist scares me! With regards to Erin's surgery it was very scary at first, i've probably never posted just how scary but i guess if someone was able to pre-warn me i'd have been prepared - it was just seeing her back on a ventilator and so helpless but this time she was mobile so even worse than neonatal! It sounds horrendous but it was unbelievable just how quickly she recovered, 2 days I.C.U, 2 days High dep and then into a ward and home. She was a complete star! You'd never guess now she's had surgery but it will stay with me forever, i guess that's just being a mum eh!

Hi clairec, my LO also has PHT, and I'm starting to believe its the job of doc's to scare us out of our minds. I DREAD meeting the docs, as even if they have good news, they will add a big "BUT".

I as yet haven't met the cardiologist directly, only our baby's peaditrician. Probably for the better. Btw, what was Erin's surgery like? I heard it's quite a routine procedure, but am confused whether they do an open-heart surgery or go through the back/side?

 

[preemie12]

Hello again Preemie12! My little guy had the PDA open at birth like so many small preemies. But within 24 hours the pressure in his lungs was so high one of then ruptured and he had hemorraging. I won't go into the awful details but we came close to losing him that first day. Was very scary. Luckily after that he responded to the medication (essentially a form of advil) and it closed on its own.

If you're feeling brave there's an actual PDA surgery on youtube - lasts about 10 minutes and the doctor explains everything he does. I know your beautiful baby no longer has her PDA open (HURRAY!) but still has a VSD, still perhaps it can reassure you just how routine such operations are

Thanks Vermeil. You've always been amazing in your support and helpful in your suggestions.

I did youtube it - but I got the open-heart surgery video - and I couldn't possibly watch that.