Pregnancy and CF

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Historically women with CF have been advised not to become pregnant because of the stress pregnancy would place on a body already under stress from fighting CF. As the CF population grows older and healthier some women with CF are having babies. Here are first-person accounts.

Hi, I am pwcf age 29. I am very proud of my story as my doctors told me, I too, should never have children. I have wanted children from as early as I can remember. (my earliest memories are when I was 4) Doctors told me I would not live to see my son mature or perhaps even born. I am responding to…

I’M A 20YR OLD WCF AND HAVE NOT HAD THE PRIVILEGE OF MEETING SOMEONE WCF THAT HAS HAD CHILDREN. HAVE YOU HAD ANY COMPLICATIONS? ARE YOU AS HEALTHY AS YOU WERE BEFORE HAVING THE CHILDREN? MY CF DR HAS ALWAYS BEEN VERY AGAINST ANY OF HIS CF PATIENTS HAVING CHILDREN. (I WAS PUT ON BIRTH CONTROL WHEN I WAS 16.) I HAVE WHAT I WOULD CALL MILDLY MODERATE CF, SO I AM VERY INTERESTED IN ANYTHING YOU HAVE TO SAY. INTRIGUED…..

I am pleased to say I have a very healthy 3 yr. old son. (I also have a foster daughter, age 11, however she was much easier on my body as I didn’t give birth to her, LOL)

Before my pregnancy I was fairly healthy, meaning: I was in the Club about 2-3 times a year, I had on occasion, bouts of bleeds resulting in transfusions, and was a good healthy 125 lbs. (I’m 5’5). My FVC’s were in the high 80’s to low 90’s. And I was able to hold down a full time job as well as have a very demanding foster child at home. (He has since moved on as he was just too much for me to handle physically) I found out I was pregnant much by surprise. I had tried to have a child of my own for 6 years with my husband, but to no avail. I was not sick at the time I found out I was pregnant, however it was in January, the worst time of the year for me (winter). I got sick quite quickly afterwards and found myself on oral Cypro and Septra. That lasted for a month and then I knew the inevitable … A visit to the Club!! I ended up there for 2 weeks and then was discharged only to return 2 weeks later and stay until my son was born. I spent most of my entire pregnancy in the Club. It was horrible. I can remember crying my days away and having the support staff from the CF Clinic and the nurses tell me it would all be worth it in the end. I was TPN fed through my Port-a-cath and was on IV meds for the most of the pregnancy. I was on Tobra and Astreonum (Sp?) (I got off IV meds 2 weeks before my son was born but continued on with the TPN.) I had ultrasounds done weekly to make sure my baby’s growth was normal, I have lots of prebirth photo’s in his album!! I also developed diabetes in the very early stages of the pregnancy. I was not fortunate enough to have it go away as most cases of gestational diabetes do, I to this day, am insulin dependent. My stay in the hospital definitely had its ups and downs…getting used to being diabetic is a hard adjustment. Especially when you figure it is going away after you deliver your child and it DOESN’T. I also had to stay on the labour/delivery ward my WHOLE admission, YES, you guessed it, I heard screaming ladies all day and all night!! YIKES! if that doesn’t build anxiety I don’t know what does. LOL I was also worried about the effects the IV meds would have on the fetus. They told me that perhaps because of the Tobra my child could be deaf, lucky for me I am a sign language interpreter, but one always wants a healthy child.

The doctors did a amino on me at 34 weeks to see if my son ( I knew at this time he was a boy from all the previous ultrasounds. I also knew he would be a “thumb sucker” as every time we did the ultrasound he was sucking that little thumb of his.) was developed enough to deliver him. His lungs needed more time. We waited another 2 weeks and I just couldn’t take it anymore emotionally or physically. So they induced me into labour. I had a natural delivery, I didn’t want a C-section. They gave me an epidural and made sure I didn’t do much pushing so I wouldn’t have a bleed. 18 hours later I had a son, 7lbs 7oz, he was big because of the TPN and diabetes. He is perfectly healthy!! We only stayed in the hospital 3 days after I delivered him, I was soooo anxious to get home, finally!

I weighed 98lbs when I delivered him 🙁 And my FVC’s were now in the low 60’s. I ended up back in the Club when my son was 9 months old on IV’s again (they wouldn’t let me be on home IV’s as they didn’t think I would rest enough, my body had taken a severe beating. My son was also colicky) However, they did let me have my son in my room with me while in the hospital. (go figure?) They probably let me do that otherwise they wouldn’t have gotten me into the hospital!!

I ended up trying to breast feed my son, that lasted 4 months and I just couldn’t keep it up, I was loosing weight rapidly! Even on my 6 cans of chocolate ensure plus a day. So regretfully I gave up breast feeding and put him on the formula. His colic stopped though when I put him on formula, that was a big bonus. I wonder if it was the oral antibiotics I was on post delivery that caused his colic? I had another infection starting just about the time he was delivered. Since then I have been on and off IV’s at HOME about 4 times a year. Just recently it had been back to normal at 2-3 times a year. It took me 2 « yrs to gain my weight back, I am up to 123lbs now. I have had several bouts of bleeding since the birth and had to have some spots cauterized as well as more transfusions. My FVC’s are now in the high 70’s to low 80’s. I know there are lots of things I have left out of my experience. I also know of others who have had children … They have done fairly well, comparable to myself, however, when they have attempted to have a second child that is when their bodies ‘gave up’ and they passed away. I really want to be here for my son. I would truly love to have another child, maybe even two more, but I do not want to jeopardize my health anymore than it has been. I fully intend to be here to raise my son!!

Well there it is, my story, I have been wanting to tell it for quite some time now! Finally I have, I get so excited telling about my pregnancy as I thought it may never happen for me 🙂

Another account:

Hi all, If we are telling our pregnancy stories, I just love to talk about my pregnancies. My first one was a surprise as the Drs. had told me I couldn’t have children. I went into the club for a clean out and it was their policy to do a pregnancy test upon every admittance. After I was admitted and they drew my blood my man and I sat there for HOURS just waiting to get my IVS started and all. I kept asking the nurses and I knew something was up because they kept telling me I had to wait for my dr to come in. So at like 8pm we were wandering the hall and I spotted my dr at the nurses station. I told my man he should go home because we had been there all day and he left, a minute later my dr walked in and said “I hear congratulations are in order…” I said “excuse me?” and he told me I was pregnant. After that I think I just about passed out. I don’t remember much except we were looking through the PDR at the meds he wanted to put me on and we agreed on the 2 IVS and he left. I was so excited I tried to call my man at home and he wasn’t there yet. So I called my sister (also a CFer with a daughter 3 years older than my son) and we jabbered about it for a while. Then I tried to call my man again and I got a hold of him. I told him the news and all he could say was “you’re kidding…” I told him no, I was serious and he started crying! Then I was crying and my favorite nurse came in (Judy) and she was crying. We all cried together and we were ecstatic.

I got to go home after a week in the club and had a normal pregnancy until another problem when I was 20 weeks pregnant and I had another stay in the club. Other than that I had home IVS and oral antibiotics every couple of months. Always with a lot of discussion between all of the Drs. and myself.

I gained 50lbs (I was really underweight to begin with, so they wanted to beef me up). Lots and lots of milkshakes, no tube feeds or anything. I had high blood pressure and the last couple of months was hard on breathing when I walked around. I was on semi-bed rest for a couple of months, but at home and I could still do some things. I had Drs. every week or so, twice a week at the end and one Friday my OB told me that because of the size of my baby and my breathing he would induce labor on Monday. I was 38 weeks (so he was 2 weeks early). They induced labor on Monday morning, 29 hours and no pain meds or epidural later I finally squeezed out that 9lb 4oz baby boy! He was born on Tuesday, we went home Thursday and he had to be hospitalized the next week for jaundice. He was tested for CF at that time and was negative.

Before (my child) was 1 we decided we would like to have one more baby, the sooner the better. We tried like heck for 2 years and finally, just as we gave up on the whole thing, I missed my period! We went to the dr and sure enough, it was true. I had a lot of bleeding with the 2nd baby, not my lungs either. I was constantly worried that I would miscarry. Other than that, same story as the last time. My PFTs stayed up and I gained 30lbs with that one. I never lost all the weight from the last one, so I ended up at the same weight at the end of both pregnancies, 165 lbs!

This time, since my last baby was so BIG and they barely got him out, they induced my labor at 37 weeks (3 weeks early). So last November 6th, the day after election day (we heard the election results on the way to the hospital) me, (my first child), and my man and my best friend went to the hospital and 12 hours later, again with no pain meds or epidural, I delivered an 8 lb baby girl. She will be 1 on Thursday!!!! (My first child) laughed at me the whole time I was screaming…

So, to sum it all up, I have had my PFTs at the same numbers for the last 5 years, before my 1st pregnancy and now, they are the same. I have been sicker than usual since February this year, but I don’t know how much of that I can chalk up to the pregnancy. Except that this baby is SO demanding…

I did breast feed (my first child) for 6 months and (my second child) for 4 months. I only stopped because I had to because of some meds my dr wanted me on for a lung infection. (My second child) was tested for CF at 4 months old and she too was neg.

And, now, the very end, I promise. I would like to have one more baby. I know I’m taking risks here, but I figure I might as well do it now while I am still fairly stable. But not right now because (my second child) is such a whirling dervish of disaster. Her nickname is “El Nino…”.

That’s my stories, and I’m sticking to them. Besides, we have cute babies… Happy birthday to (my second child) on Thursday! (A proud mom), 25yo pwcf and mom of 2.

Another account:

Here goes my story for the millionth time. Actually, I would imagine that I have missed quite a few of you, since I haven’t been keeping up with the list very well.

I was 19 and halfway through college when I discovered that I was pregnant. I guess that it was meant to be. I wasn’t married, but I was pretty serious about the dad (my hubby now). In prior a relationship, I had stressed the need for ‘protection’, but in this one, I fell back onto the attitude that I’d been raised with. That is that there was no way that a CFer could *ever* have children. SURPRISE!!! 🙂 Anyway, I figured it out because my lung function was down and the doc put me on Cipro. Every time I took one, I would vomit until it came back up. I found this strange since I had taken Cipro several times before with out any problems. I called my doc to report this strangeness from work (I also happened to work with my hubby). The first thing he wanted to know was if I was pregnant. Of course, I told him no way (too many extra ears at work!) and was in shock the rest of the day. I bought a test and the dot was even darker than the picture on the box. Then I had to tell my doc, that I’d lied to him, right after I told (my husband).

By the time I told the doc, we had decided what we were going to do (get married and have a baby!). Since I was the first pregnant CFer at our Center, he wasn’t really sure that we’d made the right choice to begin with. But as time went by and my lung function improved and kept improving and the baby seemed to be developing normally, he changed his mind. I spent only 2 weeks in the hospital during my pregnancy…mostly because we didn’t take action against a lingering cold soon enough and my body couldn’t keep me and the baby healthy at the same time. That was at about 30 to 32 weeks. Other than that, I don’t think I’ve ever felt better in my whole life. I only gained 14 pounds, but I have never had problems with weight gain, so that was good.

The OB doc and I decided that I was ready to have the baby at 39 weeks, so we packed up on the assigned morning and went to the hospital to have them ‘jump start’ my labor. All they ended up doing was breaking my water…that was enough to get things going. Seven hours later I was the very proud mom of a beautiful 7 pound 4 ounce baby girl. She will be 6 years old this January. She is the light of my life. My happiest memory is of getting a call the Friday before my first mother’s day telling me that her CF test was negative.

Reflecting, I don’t think I would have ever had children by trying. I would have been too chicken. I also think that I would have managed to scare my husband off before he proposed. Having a child has helped me to understand some of my mom’s attitudes and that has brought us closer together. My husband and his family are some of the best people that I know, so my pregnancy has brought me more rewards than I could have ever dreamed.

Now does anyone have any suggestions on how the keep the kid little forever??? 🙂 My baby just got her first report card from Kindergarten! (Nearly perfect, as usual! Of course, I *might* be biased!)

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