Underdeveloped lungs - is there any hope?

[clairec81]

I have had a difficult pregancy since the start with bleeding at weeks 7, 8 and 11. It waas discovered I had a blood clot causing the bleeds but the hope was this would just disappear. At 19 weeks my husband and i went for a private scan as my husband works off shore and would be away for out routine 20 weeks scan. At the scan we were told that I had significantly low fluid and to go straight to the hospital. We arrived and were scanned only to be told that there was not enough fluid and I was offered a termination. We were absolutely gutted. The hospital arranged for a follow up check with a consultant a few days later. At the follow up the consultant explained that he felt that the lack of fluid was due to potters syndrome - no kidneys - but arranged for this to be confirmed at Yorkhill Hospital by a Professor of Fetal Medicine. We arrived at this appointment thoroughly depressed and very tired. To our surprise the Professor scanning me said he could clearly see the kidneys and bladder and that the problem was placental - tghe blood clott from the beginning was still there and had damaged it. He told us he felt that there was enough fluif for the baby to develop but had concerns over premture labour. We left feeling completely shocked and trying not to get too excited. This situation continued until I was 25 weeks when, as predicted, my waters broke and I was admitted to hospital. II received steroids and stayed in for a week being told that most women deliver within 48 hours, and most of the remainder within 2 weeks. The hospital explained that the more hours, days and weeks I could gain would make all the difference. Well last Mondayy I reached 31 weeks and attended my usual weekly scan only to be told that the lungs were measuring small and the consultnat believed the baby would die shortly after delivery which is a section scheduled for 36 weeks. I feel completely crushed and cannot believe that my little fighter has come this far only to be told this. I am now looking for a miracle and any stories of people who may have experienced anything like this. I have a possible 4 weeks until delivery and need some hope to keep me going.

 

[AP]

it doesnt make sense, what the final consultant has said. Many preemies are born with very very tiny undeveloped lungs, and with help with breathing and time to let them develop, things improve.

i think it was a very brash thing of the consultant to say, especially after all thats happened so far!

in fact the consultant sounds like an idiot, the lungs arent fully developed yet - there is plenty of time!

can you see if you can see someone else to put your mind at ease?

 

[premmiemum123]

I am so sorry to hear you have had a difficult pregnancy so far, it sounds like you have been through a rough ride already full of confusion.

I have not been through your experience but did have a premature baby at 26 weeks who obviously had underdeveloped lungs. Babies born extremely prematurely are either ventilated for a period then go onto a breathing apparatus called CPAP (Continuous Positive Airway Pressure) which helps the baby breath by inflating their lungs, the babies learn to breathe on their own using CPAP.
Have you discussed any ventilation options with your consultant?. Most hospitals have a policy to do all they can to assist distressed babies at the time of birth, I would have thought your consultant would discuss what will happen. If not I would go back and talk to the consultant. I don't understand why your consultant is so sure your baby will not survive. After the other misleading information you were given about your babies kidneys can you get a 2nd opinion?

I will add that babies are amazing creatures, whilst Doctors do know a lot about them, they cannot predict how they will respond to medicine. A lady I met in intensive care was told her baby who suffered brain damage had a 20% survival rate and was being primed for switching off the babies machine, however overnight the baby started responding to medicine and is now home and thriving, he defied the Doctors...there is always hope...

Big hugs to you.....

 

[Emma.Gi]

My son has underdeveloped lungs, he's 15 months and still with us. He was born 10 weeks early and has had a lot of problems with his lungs, from RDS to emphysema. We've been told he'll probably need at least one transplant in his life and he's on constant medication but aside from that he's happy, naughty, cheeky and amazing. I'm sure everything will be fine, the Ventilator and CPAP will help.

 

[Dona]

Hey Hun, there is always hope. Never give up, you have a little fighter in there.

My son had bad lungs too and is doing just fine.

Dona xxx

 

[Foogirl]

I would be looking to get a new consultant.

I cannot believe a consultant would be as blunt as to come out and give that kind of information. Even if it turns out to be the case, a good consultant would surely tell you there may be complications, that they could be serious, but that there are still 4 weeks to go in the pregnancy and that your baby will be given the best medical care and every chance of survival. It is completely at odds with the consultants I was involved with, if anything they were too afraid to give any bad news at all. Everything was about telling me the good stuff about what they did know, and giving hope about the things they didn't. They knew that any stress was entirely unwelcome and unnecessary at that stage.

I'm not a doctor and so have no idea whether the information they gave you is accurate but given they've already got it wrong several times, I would say you should definitely be seeing someone else.

Abby was born at 29 weeks after having the steroids at 26 weeks. She needed minimal respiratory intervention and was off C-pap within a week.

I hope everything turns out ok for you.

 

[Isaacs mum]

At my 20 week scan I was told that there was a low amount of fluid around my baby. I was sent for a detailed scan at another hospital of Fetal Medecine to try and find out why. At this scan I was told that everything seemed to be ok and they could not find any reason why. I was told by the consultant that sometimes it is just one of those things that happen.
I continued to be scanned at my own hospital, at first fortnightly and then weekly to check the amount of fluid and the development of my baby. The fluid continued to be low and at one of the scans I was told that there may be a possibility that the lungs would not be developed enough for my baby to survive (as they were measuring small on the scan). I was told by my consultant (who was wonderful) that I would not go full term. She said that initially we would aim for 29 weeks but hopefully get to 36. I had steroids at 26 weeks and was shown around SCBU to prepare us for when our baby arrived.
I was told that if at antime the fluid went too low for the baby to continue to develop then I would have the baby straight away.
As time went on and I was then being scanned twice a week the fluid actually started to increase and the consultant became more positive but always cautious,
Anyway to get to the point at 3 days before 32 weeks my waters broke. Three days later at 32 weeks I went into labour but as my baby was lying accross (he had been all along, don't think there was much room for him to move) I had to have an emergency cesarean. My son was borm weighing 3lb 11oz on the 30/03/09. He was on the ventilator for 1 day and CPAP for 1 day. He came home after 25 days in SCBU and I can tell you he has a fantastic set of lungs which he likes to use regularly.

So don't give up hope, all through the pregnany we were worried about the outcome but now have a beautiful son.

If you hane any questions please ask as your situation sounds very similer to mine.

Excuse the typing as I am typing one handed.

 

[nkbapbt]

I wouldn't pay them any mind honestly. During our NICU stay we had a roommate who lost ALL her water at 16 weeks...they kept pushing her to have a D&C even though baby was still growing and doing fine. They kept saying he will never live, his lungs are not developed enough....and the whole nine yards. She gave birth to him at 30 weeks and though his lungs were under developed he did just fine with oxygen therapy. His lungs were more 'stiff' than other babies, because of the lack of fluid pumping through them in the womb. But it wasn't something that stopped him from thriving.

He is now 10 months and doing awesome.

The beauty of lungs is they can grow, even when Lakai (my 24 weeker)
had his lung collapse he was back in business with in a week.

Frankly I sometimes wonder if health professionals just tell you the worst possible outcome and never offer hope because they don't want to have it back fire on them. Which makes sense.

Your baby clearly has the will to be here and as a parent you just need to let them prove themselves. Lungs, brains..babies bodies in general are a wonderful healing thing. They can overcome things most adults cannot.

Hang in there and keep strong. There is hope, don't loose sight of it.

 

[clairec81]

Hello everyone

Just a wee update on our baby. Well I went into labour on Christmas Eve and baby bacame very distressed. The doctors decided to give me an emergency section and our beautiful daughter Erin Grace was born. She needed to be ventalated but only for the first 6 hours and then she began breathing on her own - truely a miracle! She is in the neo-natal and has a long road ahead of her but we feel truely blessed and want to thank everyone for the stories and comments they really did help keep us positive. She was named Grace very appropriatley as it means gift from God!
So there really is never NO hope!

Thank you again

Claire and Paul

 

[Marleysgirl]

Congratulations!!!!!!!!!!!!!

Please be sure to keep us posted on her progress

 

[Foogirl]

That is absolutely fantastic. I'm so pleased to hear her progress has been good. Vented for only 6 hours - amazing, considering the consultant's inital "advice"

Congratulations!!

 

[AP]

Thats brilliant - theres so many stories going on around here which really makes me wonder if we should pay any attention to these 'professionals' at all!

Congratulations on Grace, and I hope you stick around with us Claire xxxx

 

[bumpsmum]

congrats on baby Erin Grace such a lovely name and fantastic that she was born so well. All the best hun xx

 

[premmiemum123]

Congratulations and welcome to baby Grace. Sounds like she is doing really well, ventilated for only 6 hours, that is amazing, what a little fighter.

x