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MSengsourya
09-25-2012, 06:08 PM
Has anyone taken the prenatal steroids to assist your baby with lung development? I've read where some doctors are giving this to assist with CDH babies lung development. Has or is anyone taking these? And if so which one? I'm seeing my prenatal doctor this Thursday and want to speak to him about this..

Thank you!
Michele

Chris and TracyMeats
09-26-2012, 09:50 AM
I have read here on the forums, many of our moms get the prenatal steroids to assist the baby with lung development right before birth, especially if they are going to be coming early or just to help with the lung development. Let us know what your doctor has to say on the issue.

ReneeB
09-26-2012, 02:50 PM
Michele, in theory, if baby makes it to term (and I would estimate +38 weeks as some docs will do an amnio around 37 to test for lung maturity) then steriod 'shouldn't' be of any benefit.

But, there are a number of variables that would factor in on that. One of course being that the date of conception is based on last menstural period and for a number of women that's an arbitrary date.

Thus, estimating full term around 37 weeks could result in a bit of an error which may see slightly immature lungs.

If there is any risk of baby coming early (ie history of pre-term labour or early delivery) or any underlying pregnancy complications that may affect being able to carry till term, then I would look into the steriods.

What I know from the steriods (after being on alert to deliver twins extremely early) is that they have a benefit of about 2 weeks (ie the baby's growth catches up to the benefit of the steriods at that 2 weeks period) and that really, only the 1st administration (which is 2 shots ~24? hrs apart) is effective (subsequent administration is shown to have no additional benefit). Still, some doctors will administer the steriods a number of times and believe each application is effective.

If these doctors are right in their theories, then great, the baby gets added benefit as often as they are recieving the steriods.

If these doctors are incorrect in their theories, then by administering the steriods too early, they may simply waste the intended benefit.

For me, I had placenta previa with our CDH baby. At +29w I had a bleed. When admitted to the hospital they gave me a steriod shot, 24 hours later followed by another. It was my one and only 'shot' at having that as a benefit. Out of all the doctors that I met during my last 8 weeks, only 1 felt there may be added benefits of trying for another steriod shot. Suffice to say, I had 3 more bleeds (2 of them way worse than the 1st) and my 2nd last bleed they were seriously considereing early delivery...I did not recieve the steriod shot again as the hospital's mentality was there was no added benefit following the 1st.

If your thinking about it and your close to term then I would ask about it and even push for it. Any little benefit you can provice your baby in the lung department, why not. I don't recall there being any 'issues' with it and certainly those issues are secondary to baby breathing.

If you have a while to go (which I don't think you do if I recall) I would question your doctors policy and see how they feel about multiple administration to best determine how early you would consider wanting the shot (ie timing it for when baby is eligable for ECMO??) and possibly even do your own research to determine the timing that you would likely feel more comfortable with.

Good luck and I very much hope if this is something you consider doing, that you get it. For what its worth, while we did have the shot at 29+ weeks, Payton's lungs did really well (she was born at 37w5d) so maybe it did have some lasting effects all those weeks later.

MSengsourya
09-26-2012, 06:20 PM
Renee,

The research I found was the same in your post. It is two shots, 24 hours apart. The posts I read on it said that additional shots show no added benefit however do show risks to the Moms. They can cause fluid retention and elevated BP if given for long periods of time.

I am 36 weeks today and my Dr plans on inducing me at 39 weeks so we can have all the Dr's in place for my sweet girl. I know the research doesn't show evidence that it helps nor did I find where there has been a direct study done on CDH babies. However, I found many posts where moms with CDH babies did get it in an effort to assist. Some Dr's say " why not?" I'm hoping this will be my doctors thought also. He's been great and he knows I'm presistant.

Thank you for your input!

Michele

MSengsourya
09-26-2012, 06:21 PM
I will definitely keep you guys updated!

Michele

MSengsourya
09-27-2012, 09:33 PM
Well I talked to my doctor about the prenatal steroid shots. He agreed that since there is no risk to me why not take it, it certainly won't hurt. And if there is a remote chance it will help then let's do it. He said the sooner the better so its been orders and I should be getting it early next week! I pray it will help my sweet girl!

ReneeB
09-28-2012, 09:46 AM
Michele,

So glad to hear your getting the shots. Next week is great timing. How are you feeling otherwise? Both emotionally and physically? Thinking about you and sending positive vibes your way.

Chris and TracyMeats
09-28-2012, 02:19 PM
Anything to help your precious baby's lungs is worth a try! It won't hurt. Praying it will give your sweet girl additional help to come out fighting! (((HUGS)))

MSengsourya
09-28-2012, 05:23 PM
Renee,

Feeling all the normal pregnancy symptoms, lol I have the normal pregnancy weeps. I'm anxious about my sweet girls arrival. Both excited and scared to death as any of us are who are expecting a baby with CDH. The girls I work with threw me a surprise baby shower. One of the gifts I received was a pretty porcelain cross that said " Bless our baby girl" on it. I lost it.....I couldn't speak for about 5 minutes or breathe. I kept apologizing to them. I was glad they got it for me because I thought it would be perfect to put in her bed or hang on it. It was a very real moment. I'm faithfully that God will take care of my sweet girl and I will be here to look out for her, encourage her and pray with her though this journey.

We have blessed with wonderful old friends and new friends!

Michele

MSengsourya
09-28-2012, 05:25 PM
I agree Tracy! Ty for the continued prayers!!!

Michele

Megan Smith-Weedon
10-12-2012, 08:13 AM
Wish we had that option with Alyssa 8 years ago. Who knows if it would have helped or not though right!? But I agree it can't hurt to try. I hope it all works out well! We take Alyssa to the Pulmonologist in 2 weeks for a Lung Growth and Function test. She was only born with 1/4 of the left lung.

ReneeB
10-12-2012, 11:41 AM
Michele, how are you doing? Would love any update your able to provide.

Rose Luna
10-13-2012, 01:45 PM
This is just my opinion i don't kno if it will affect anyone in anyway and if I offend I'm sorry don't mean to. My son was not diagnosed in while I was pregnant. I had many problems with my pregnancy and was advised to terminate. Because my son was going to be so sick they believed at the time that he had spina bifida that I would be allowed to terminate up 6 months gestatinal age. I refused to terminate but was still seeing reg dr endocrinologist for my diabetes and thyroid problem maternal fetal dr and cardiologist for baby while I was pregnant

. They knew something was wrong but they thought like I said it was spina bifida. I was often in the hosp because my son wouldn't do breathing reflexes when he was supposed to be doing them. Long story short they decided to get him out 3 weeks early. He was due 12/25/2009 but had so many problems drs got together and decided it would be easier to take cAre of him outside than inside so we planned the c section for 12/03/2009. I received steroids for his lungs everything went as planned.

He was born and had bit of trouble crying when he was born but that's it. Other than that a perfectly healthy normal baby who was not in the nicu and no spina bifida. Really at this point I had been scared about all his issues I expected to have a 1. Eyed 1. One arm 1. Legged baby. Really I had been really scared because of what I had been told. We went home Nd had no major issues. He got rsv when he was about a year And had some nebulizer treTme ts because he had gotten sick several times. Then when he was a year and four months he got real sick with pneumonia rsv and flu. That's when they found his CDH.

I honestly in my heart believe the steroids saved his life. At this point I don't know if we would have had a different outcome had we not had the steroids and I don't even want to think about what would have happened had he not had them. In my heart I believe that's what saved his life. I could be wrong but it's my opinion and we will never know other wise. I cry myself to sleep sometimes thinking what if what if I had had a normal pregnancy and had never gotten the s

MSengsourya
10-15-2012, 11:20 AM
Rosa,

Thank you for sharing your experience and this is certainly the place to do it. I'm so glad your lil man is doing good!

2 doctors recommended termination to me. But that's not who I am and I refused to honor her life that way. At 20 weeks the specialist gave her a .69 lung to head ratio. Which as we all know on here is severe. At 34 weeks her LHR was 1.0. And at 36 weeks it was 1.35. My amniotic fluid went from 25.6 to 24.6. You could see her practicing breathing and yawning. My Dr was pleased with the growth, I could see it on his face. She weighed in at 7lbs 1oz. He said that we can expect ECMO but this improves her chances. I told him between me, him, the specialist and God anything is possible. He gave me the biggest hug.... I won't ever forget that feeling!

I believe my sweet girl is already teaching the lives she is touching.

Michele

MSengsourya
10-15-2012, 11:21 AM
Renee ,
I will put my latest update on my initial thread. :)

Michele