Anyone else's baby have a PDA?

[scrambled]

Hello, My twins were born at 30 weeks, and they are now 38 weeks(gestation), still in NICU. T1 is healthy and ready to go home but T2 has a PDA (patent ductus arteriosus) and continually de-sats while feeding, and normally needs oxygen to bring her levels back up. She's had a few overnight traces which haven't been too good and it looks like she needs to go back onto low flow. Look slike we'll be taking them home seperately, and they are not really sure what is wrong with T2. Just feeling a bit low and wanted to share with others who understand the terminology instead of friends who don't really understand, no matter how hard they try.

[Sidge]

Hello scrambled and congratulations on your new twins

My DD2 was born at 34 weeks with hypoxia due to placental abruption, and was then found to have a rare genetic disorder.

Anyway she had a PDA and an ASD and came home with an NG tube and oxygen along with sats monitor and apnoea monitor as well as shedloads of meds. Her holes didn't close on their own as they hoped they would, and she had open heart surgery at 6 months old at Southampton.

It went really well and she has been completely stable cardiac-wise since then, and for the last few years they only wanted to see her yearly. This year they said they didn't want to review her for 3 years! So it's all good now.

What's the plan for baby 2? Do you feel happy taking her home with O2 etc?

[scrambled]

Wow Sidge, glad she is doing well now. DD4 (she was born a minute later!) has got another trace on thurs, so I think it depends on that. They aren't sure if the desats are related to her PDA or not but it seems likely. She isn't really at the going home stage yet, they want to treat her delicately! I think i'd be terrified taking her home on o2, it's bad enough watching her colour change at hospital and her sats seem to take forever to go back up, her record this week was down to 16! Thanks for replying x

[Sidge]

16!! Crikey that's low, I would be questioning whether that was a true reading - she's keeping you on your toes then!

No doubt they will look after her well, she's in the right place and will follow her closely even when she is discharged.

Feel free to PM me if you want to chat more, or if they start talking about surgery. All the best!

[Mandy21]

HI there, can't really offer any advice other than to say my Twin 1 had a PDA and as far as I know, there is still time for it to close on its own. Also as Sidge says, I think the operation is quite straightforward (easier said than done I know).

My twins were born at 27+6, they were discharged from SCBU at 35+4. Twin 1 had a heart scan a couple of days before we were due to go home and they confirmed it had closed.

Good luck, hope you're OK. Its a really hard time but honestly, it gets better :)

[WillbeanChariot]

Hi scrambled and congratulations on your twins.

DS was born at 27 weeks and had a PDA. It did not close by itself and his guts were too delicate to try the medication, so he had it surgically closed at about 30 weeks. It was terrifying but the hospital treated it as a very straightforward op and it went fine. I hope your LO won't need the surgery but that was our experience.

We brought DS home with oxygen and it was fine once we got used to it. If it looks like you are getting to that stage I'd be happy to answer any questions. After we brought him home we did overnight traces once a week or so and they gradually got better until he came off oxygen altogether.

If the desats are mainly at feeding have they considered reflux? Of course I'm not a medic but DS would desat at feed time well after his PDA had been closed and he was diagnosed with reflux. With him I'm not sure he didn't just need more time to get the hang of sucking, swallowing and breathing all together.

He's doing well now and you'd never know what he went through. As Mandy says it gets better!

[Penguindreams]

My 26+2 weeker had a large PDA. It finally closed after 2 or 3 doses of ibuprofen. Has your twin had any meds?

He regularly de-satted (into the 70s, never as low as 16, damn that must have been scary!) whilst feeding and immediately afterwards, and they thought it was linked to the PDA (and then to an infection/just being awkward ).

He came home at 37+1 on 0.03 O2 for about 3 weeks and it was a lot easier than we'd feared. He'd stayed in a few days longer to see if he could come off it, as we wanted, but in the end I wished we'd just got him home sooner!

[TheCoolWeb]

My 29 week but teeny for it DD had a PDA and nobody seemed all that fussed about it. (There was a long list of other stuff mind). We had a follow up just over a year after discharge and it had closed up by itself.

She came home on 0.01 with 0.02 for feeding. It was incredibly straight forward. When I think about it now (she's 4) I wonder how we managed, but at the time it was amazingly easy.

[scrambled]

Just managed to make it back to the computer!
Thanks everyone, may well be in touch with some of you.
DD4 is on drugs to narrow the duct, (tried ibuprofen, which didn't really help and she is too old for it now) which are helping, it looks likemthey will operate internally when she is 5 kg. They do seem to talk about it as straigtforward, but the idea of heart surgery is as you say terrifying. They are considering putting her back on oxygen at the moment, but the problems are mainly when she is feeding and they don't want to do it unnecessarily. Willbeanchariot i may ask about reflux, do you know what the other symptoms are in preemies? she's not very sicky but does find it hard to bring up her wind (she is FF)
Luckily we were not there for the desat to 16, but were there for the 26, and the fairly frequent low 50's and 60's, going grey and needing oxygen!! Getting used to it now! She has another trace on Sunday night so fingers crossed for that! Thanks everyone x

[Millymolliemandy]

Hello, my 31 weeker (now 3 weeks corrected) has reflux; symptoms are regular vomits (not just posits) and pain in her tummy which seems to come from nowhere - she is fine one minute then stretching out her legs, arching her back and wailing the next. It didn't seem to come on until she came off the ng feeds; and she is now on ranitidine and domperidone, although I am not sure how much difference this is making. Other than that we are trying practical stuff like tilting her mattress (she was point blank refusing to lie flat in her moses basket for the first two weeks home). It is clearly not much fun for her at all, and I wish we could do more to help her. Congrats on your twins and good luck with going home, which I found terrifying and exciting in equal measure.

[WillbeanChariot]

Hi again scrambled. As MMM says vomiting up feeds is the most obvious symptom, and pain. I don't think it's unusual for babies with oxygen to need more at feed time though. If she's not very sicky I guess it doesn't sound like reflux, but my son wasn't too sicky either, he would just bring up occasional small amounts and have frequent desats and bradys.

Easy for me to say but try not to worry about the surgery. If she needs it when she gets to 5kg I'm sure it will be routine. DS had it when he was well under 1kg and the surgeons were even quite relaxed about tiny little him.

Let us know how things are going.

[clabsyqueen]

Hi scrambled, don't have experience of PDA but want to say I totally empathise with having to endure the subtle form of torture that is a sats monitor. The incessant bleeping at desats has a wonderful way of putting your nerves on edge whilst all around you say stay calm, the baby can tell when you're stressed. Arghh! Currently dreaming about desats and bradys as I'm the middle of my NICU/SCBU stay with my 28 weeker (now 32+4). Wishing you good luck and lots of patience.

[AmandaB22]

My little one (26 weeker) had a PDA it was there till it closed on its own around 36 weeks. he has had reflux since about 29 weeks and despite meds (domp,ranit,gav) it keeps on getting worse!! grrrrrrr.


He came home after 14 weeks in hospital

Hope your little one is ok xx

[Jemeraldx]

I know how you feel with all of it. including the part where people don't understand. being on SCBU can be a really traumatic experience!. The neonatal nurse told us @ the time that It was more traumatic for the parents than it is for the baby. The baby doesn't remember, the parent does!. Its so true my twins are both just turned 2. They were due 7th Jan (also I was scheduled forcs 17th dec @ 37 weeks). They were actually born at 29+2 weeks weighing: twin 1 3lb 2oz & twin 2:2lb 3oz. twin 1 was a little fatty, he took most of the nutrients. Twin 2 was like a little scrap. twin 1 sailed through his time on SCBU, while twin 2 had all the problems. twin 1's PDA resolved itself. Twin 2 had to have medication to close it but became poorly & it reopened. Long story short both of his lungs collapsed, he had to be rescuscitated & ventilated (up until then he'd been on CIPAP).There was talk of him having an operation when he was well enough & an heart specialist came all the way from leeds only to find it had resolved. I was absolutely petrified at the thought, he was soooo tiny!. But we were told he'd operated on smaller & younger preemees & he was the best in his field which put my mind at ease. He was the same always desating. He was backwards & forwards all the time with his oxygen. Its really frustrating all you want is to see them making progress but it will happen so keep your chin up, just have patience. they both had gaviscon for the first year due to GORD. This has now resolved too. There was also talk of him going home on oxygen, luckily we didn't have to do that either. The first time you take them home can be as daunting as it is exciting. I know the machines are annoying (i think we spent more time lookin at them than the babies). but when you go ho,me it can be scary without them & the reasurance of the staff. I hardly slept for the first six months I was scared they'd stop breathing. I used an Angelcare monitor (I think it was more for our peace of mind!). It seems like it lasts forever on SCBU but once your home you'll wonder where the time went. It might seem like a bad dream now but by there first birthday it'll be a distant memory. I hope this helps - just to show you I know what you're going through. I came out the other side & so will you its scary going home but you'll be fine. Theres one thing about being the parent of a preemee. It gives you a greater appreciation of the smaller things!.x