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Help me please, I need to hear from people who have been through pregnancy with scleroderma.


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8 replies to this topic

#1 LouiseH

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Posted 31 August 2012 - 08:00 AM

Hi everyone.

I really would like to hear from anyone who can help me; I'm wanting to know if anyone who has scleroderma and has also been through pregnancy. Please tell me about your experience.

Also if anyone has bad lungs like me and has been through pregnancy; what it was like coping with the extra weight carrying a baby around.

I really don't know much about this subject and would love to know more, if anyone can help me I would be very very grateful.

Thank you.

Louise. :)

#2 Joelf

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Posted 31 August 2012 - 09:52 AM

Hi Louise,

How lovely to hear from you again and many congratulations on your pregnancy! :emoticon-congratulations:

Having never been pregnant, I'm afraid I can't advise you from my own experience. However, I've included a link to our medical page on Pregnancy and Systemic Scleroderma; we also have an article on Pregnancy issues in Scleroderma and I've also found a thread on Pregnancy which I hope you'll find interesting and informative.

I have no doubt that some of our other members will be along to give you some more first hand information.

Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 01 September 2012 - 03:46 PM

Hello Louise

Sorry I've never had any babies but wanted to say "hello" and I hope things are going well for you. Are you under the care of a scleroderma expert because that is the only advice I can really give you.

Take care and keep posting.
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#4 Shelley Ensz

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Posted 04 September 2012 - 11:15 AM

Hello Louise,

If you are contemplating pregnancy and you have systemic scleroderma, the most important thing is to discuss this with your medical team, including your scleroderma expert. They can let you know all sorts of things. For example, you may need to complete, or discontinue, some treatments prior to getting pregnant, since some medications can be very harmful to the fetus.

Your doctors will probably want to make sure that your illness is stabilized before you get pregnant. They will definitely want to monitor you closely during pregnancy, because it is always high risk to have a serious illness combined with a pregnancy. However, if you approach things carefully and plan the pregnancy with your doctors, odds are that you and your baby will be just fine!

Others here might be able to encourage you, in that many people with scleroderma have had successful pregnancies, which I'm sure will be nice for you to hear, but you absolutely must also discuss the situation with your doctor(s) beforehand.

Here's hoping that you may eventually enjoy a well-planned pregnancy, with careful supervision.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 jmurdock79

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Posted 26 September 2012 - 10:28 PM

I have been pregnant twice since I was diagnosed. Both pregnancies resulted in emergency Cesarean surgery (pregnancy #1 was 33 weeks, pregnancy #2 was 30 weeks). Fortunately for me, I do not have any end organ involvement at this time, but I will share my experience with you.

Pregnancy #1: Baby's weight stayed on the small side measuring approximately one to two weeks behind where she was gestationally. Never had any problems, as a matter of fact, the GI issues got better because of the change in hormones! Then one day at a routine visit with the Gastro doctor my blood pressure was 180/120. They called my OB and I was told to report to Labor and Delivery. After a few attempts to get my pressures down over a 30 minute period, I was told we were having a baby. The OB later told me I had pre-eclampsia and that she would send the placenta off for discovery. When I asked her the results of the placenta testing, she said it was so shriveled there was nothing left to investigate. It's a miracle my child survived!

Although, Addison measured small, she never had any physical issues. She did spend 32 days in the NICU, only to feed and grow. For me, the only health issue was that I was stuck with a wacky blood pressure for almost two months after delivery. Once everything settled down, my blood pressures went back to normal and I no longer had to take medication.

Pregnancy #2: Baby's weight stayed small again, this time measuring two to three weeks behind where she was gestationally. Because of the pre-eclamspia, I monitored my blood pressures daily. I'm usually on the low side...95/70 so when the top number started to gradually increase, I put a call in to the OB. The doctor requested I stay overnight for observation. I did so and that's when they found that I was experiencing Absent End Diastolic Flow (AEDF). I'm not sure if the AEDF was caused by my blood pressures or by the scleroderma. Either way, I was placed on the lowest dose of Labetalol and had to see a high risk doctor twice a week for ultrasounds. The reason I had to see high risk so often was because of the fear of Reverse Diastolic Flow. If the blood flow of the cord reverses, it means that the baby is no longer getting blood flow. Because we knew this child would come early, I was given two rounds of steroid shots to help her lungs mature quicker than normal. Again, at what I thought would be a no-big-deal kind of visit, I was told to report to Labor and Delivery for yet another emergency Cesarean. This time was a little different. They actually raised my blood pressure during surgery because they feared that the meds would cause my pressures to drop and with baby being used to high pressures they didn't want to send her into distress. Since Avalyn was so small, the doctor basically filleted my body so she could reached inside with both hands, she was worried baby would swim away and get hurt. Again, no health issues for me, only blood pressure medication for a few weeks (this time it was better).

Other than some slight bruising from being handled firmly at such an early age, Avalyn actually had FEWER issues than Addison. She was never on a CPAP, only a small amount of oxygen through a nasal cannula. She stayed in NICU for 51 days, again to grow and feed. I believe the steroid shots weren't necessary, but I wouldn't have taken the chance with her. I honestly wish I had been given those shots with Addison because she seemed to need it more.

Baby #1, Addison is currently 19 months old. She is beautiful and sassy and already seems smarter than mommy. Baby #2, Avalyn is now 5 months old. She is a tan version of her gorgeous older sister and friendly to everyone.

I won't lie to you and tell you being pregnant with scleroderma is easy. I personally believe I went into remission with each pregnancy, however, you may not be so lucky and may go into progression. Surgery is a piece of cake, if Cesarean is needed, you will actually heal better than you think. I was surprised! Do ask about steroid shots for the baby's lungs, monitor your blood pressures, complete a 24 hour urine collection (once early on and once later), and have an ultrasound of your heart. This way you know where you now and if something goes wrong you and the doctor will know immediately.

I asked with the second pregnancy if I had baby #1 due to scleroderma, the doctor told me that the pre-eclampsia was NOT caused by my scleroderma because if it had been then I would currently have kidney/blood pressure issues.

Also, don't fret about medication...Plaquenil is safe during pregnancy and while nursing.

I hope this helped you. If you have any questions, let me know.

Good luck!

#6 Kathy D

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Posted 26 September 2012 - 11:12 PM

Hi Louise,

I have systemic scleroderma and gave birth last year to a beautiful baby.

Please google your medicines and make sure none of them are classified as "D", as in methotrexate etc. Your doctor should know too. I was told "a" "b" and sometimes "c" rated medicines could work depending on your needs, but the "d" medicines are harmful to your baby and the "x" could end the pregnancy.

You should also have a perientologist specializing in rheumatic disorders so they can make sure to treat things that may come up with scleroderma (vasculitis and blood flow to the uterus like I had etc).

I almost felt lucky since I had sonograms every few weeks instead the normal once every few months :) It reassured me.

I am thrilled you are expecting!
Diffuse Scleroderma Diagnosed March 2009

#7 Joelf

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Posted 27 September 2012 - 12:37 PM

Hi Jmurdock79,

Welcome to these forums!

Thanks very much for your helpful and informative post and I'm very glad to hear that both your children are now doing well.

Do please keep posting and let us know how you and your family are faring.

Kind regards,

Jo Frowde
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#8 LouiseH

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Posted 06 December 2012 - 12:45 AM

Just a quick update on this topic, I'm now 20 weeks pregnant and have just been for my scan. All is well, baby is slightly smaller than average but I think this is due to my constant throat problems, I'm finding it hard to keep my food down. My bump is not overly big so therefore I won't know about the extra weight on my lungs until I get further along in the pregnancy but so far so good. I'm also being closely watched by 2 consultants.

Thanks for all you previous replies they were very helpful.

I will keep you posted.

Louise :)

#9 Shelley Ensz

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Posted 06 December 2012 - 02:44 PM

Hi Louise,

I'm thrilled that your pregnancy is coming along okay, considering that you are finding it hard to keep your food down. I hope that improves a bit for you, but of course it doesn't help that the little ones can give a swift kick to the stomach, any time they want. I'm also very relieved that your pregnancy is being closely supervised. It's great that you're not feeling extra pressure on your lungs, at least, not yet.

{Public Service Message} In fact, I hope you don't mind, but I'm going to use this opportunity to remind every fertile woman who has systemic scleroderma (such as diffuse, limited or CREST, see Types of Scleroderma if you have any doubt what type you have) that it is important to carefully plan for pregnancy with your medical team, including your scleroderma expert. It is often necessary to complete some treatments, wean off certain medications, or wait for a break in the illness before attempting to get pregnant. Even if you are feeling fine (considering), you still need to be treated as though you have a high risk pregnancy. With these precautions, however, you are very likely to have a safe pregnancy and deliver a healthy baby! See Pregnancy and Systemic Sclerosis (Scleroderma) for more information. {End of Public Service Message}

Louise, we all get to be honorary aunts and uncles, don't we? Please continue to keep us posted. You are setting a great example of a careful pregnancy, with a difficult illness, and we are all rooting for you and our little babyette!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.