Baby just diagnosed...

[anonymous]

I have posted on here a few times, I am pregnant and my baby is due September 5, 2005. I had my amnio done on 3/22 and I received the results on Monday 4/18, the baby has CF.
I have never felt so much devastation and helplessness in my entire life. I was at work when I got the results and after my counselor said, "Jen, we've finally got your results and the baby has CF" everything went blank. I was in the middle of trianing and I completely fell apart. I left immediately to find my husband, he works for USMC on PI, about a five minute drive and I cried the whole way there. When I found him he knew the results were bad. He has a son from a previous marriage with CF. He was very strong for me and kept high spirits even though I was a wreck. We spent the day together and he reassured me we can handle this. I cried so much I didn't have any tears left in my entire body. My eyes burned and I felt so many mixed emotions. Even though I already decided I would not terminate, it was the first thought that entered my mind. I think I was just looking for an easy way out. That is not something I could do, I just wanted it to be over.
I have had time now to grieve for the loss of my healthy baby and I feel much better now. I often wondered how anyone could function after receiving such bad news and now I know.
I have found the hardest part is having to deal with friends and family. Nobody knows what to say to me. My best friend is pregnant and due withing a couple weeks of me and I can tell how uncomfortable she is talking to me. I think she feels guilty for having a healthy baby, she actually has two (twins) healthy babies.
Now, I wonder where to go from here. I know early diagnosis is really a blessing, but I'm worried things could be really bad. What if my son has a severe case and dies right away, is that posible? When my step-son was born he had to be flown to another hospital for emergency surgery is that something that could happen to my baby? They did notice an echogenic bowel at my L2 u/s does that mean my son will definately have digestive problems?
So many questions and so much fear.
Please, if you have any advice I would really appreciate hearing it.
Jen<img src="i/expressions/brokenheart.gif" border="0">

 

[anonymous]

While your son will likely have digestive problems (many with CF do and the echogenic bowel indicates possible trouble in that area), he won't necessarily require surgery. The key is getting him to have his first bowel movement during the first 24 hours. Though they may try some tricks and allow him to go a little longer while waiting for that poop.

I assure you that you will fall hopelessly in love with your little boy, just as your best friend will with hers. You will experience such joy and happiness. You are going through a natural grieving process, and you need to allow yourself to go through that process. The idea of "DEATH" overwhelmed me when I first learned of my son's diagnosis (he was 3 at the time), and while the idea floats into my head every now and then, I don't dwell on it anymore or allow those thoughts to cripple me emotionally. It's hard to live in a state of depression, when you have a beautiful little boy smiling at you. I would not trade my son for any other little boy in the world although I would love to get that cure. He is perfect in every way. You will see that in your son too.

Researching CF has done a lot to help me. There is real reason to hope for a bright future for your son (not false hope, but real hope). I don't believe that your son will pass away right away - there are just too many improvements being made in CF care. You have to put those thoughts out of your head. CF or no CF, no parent has a guarantee that their child will live the fairy tale life..... but we ALL can hope for it.

Jena
4 yr old son with CF
1 yr old daughter no CF

 

[anonymous]

Thank you Jenna,
It helps so much to know there are people out there who have been through what we are going through. And you are right, I have to get over this "death" issue. It plagues my mind. I feel so selfish because I am so scared of having to go through the pain of losing a child. I have already lost so much of my happiness with this pregnancy. I feel disconnected from this baby. Like I'm afraid to bond with him because I'm afraid he will die. I don't know how to get beyond this, I imagine it will take time, and like you said; once I see him I will fall in love.
Jen

 

[anonymous]

Jen
I agree with Jena, I am the mother of a 9 year old daughter with CF, we did not find out about her CF until Kait was born. Once you see your beautiful baby you will indeed feel so blessed and thankful that you did not terminate the pregnancy. I too used to think about the death of my child and i know what you are feeling!! No one wants that for their child. My daughter does really well with having CF and i am very open with her about this disease. Kait does have both lung and digestive problems with CF. She has been hospitalized 4 times since birth and i am very strict about her doing her treatments and taking her meds and even though sometimes she does not like it she knows why and thanks me all of the time for taking care of her. I have 2 other children without CF and unfortunatly there is so much a mother wants for her children and some things we are just not in control of. I really do believe that CF has come along way in medical research and that they will find a cure for this disease!!!!! I try real hard not to dwell on things that could happen but to enjoy everyday with all of my children because i never know when the Lord will decide to take any of them. Also i treat Kait just as i do my other children, she has chores, she gets punished and she does not get any special treatments because she has CF, excluding the fact that when she is sick i am on the phone with the doc or we are on our way to Childrens Hospital. I do believe in treating this disease aggressivly as to hopefully keep my daughter as healthy as she can be.

Try to stay focused on seeing your baby and holding your baby and how beautiful your baby is and what a wonderful mother you will be for your child, I will keep you in my prayers and remember Cf is not the end of the world, everything will work out just fine.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Jen-
Sorry to hear about your son's diagnosis. I have a three-year old girl and a one-year old boy. They both have cf. It was SOOO much harder to deal with my second child's diagnosis. I knew what we were facing and there was so much hope for a healthy boy. It is a much bigger loss than the original diagnosis of my daughter. We already knew and loved her so much when she was diagnosed, it was just a blessing that they could identify what was wrong with her and they could treat her. Also, when you are pregnant your hormones make you so emotional. Not knowing the baby, but only knowing the diagnosis is VERY difficult. That being said, now you can be prepared for his birth. Like I wrote to you last month, my son had meconium illeus at birth. We knew before hand that he had echogenic bowel and most likely was going to have bowel problems at birth. Because we were prepared, my son avoided surgery. That was such a blessing. About 10-15% of those with cf will have meconium illeus at birth; I have been told that does not indicated severity of the disease. My son's weight has been wonderful, while my daughter struggles with weight gain.

CF babies (w/o meconium illeus) are born healthy. A lot start to have pancreatic insuffiency soon after birth and need enzymes. Some infants will have a hard time getting over colds and get pneumonia. But there is very little risk of death in a young child with cf. It occasionally does happen if there are extenuating circumstances. A lot of cf babies with meconium illeus need surgery due to the fact that it was not diagnosed before birth and exploratory surgery is needed or if a baby is not able to pass the meconium after 10 days. Anytime you perform surgery there are of course risks, but I think it is rare these days. Although your surgeon would know more about this than me!! Please e-mail me at sdelorenzo@sbcglobal.net and I can forward more info to you about meconium illeus and what needs to be done before his birth.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[anonymous]

Hi, Jen. I'm sorry to hear that the results of your amnio came back positive. I am in a very similar position, I'm due on September 4th, and we found out the first of March through CVS that our daughter will have CF. Even though you know it's a possibility, and you think you're prepared, I don't think you can ever really get your mind around that until you know it for certain.

For me, I felt like I was handling it when we first got the diagnosis. My husband had a much harder time. But I think, like with everything, it is a slow, slow, changing process, coming to terms with something like this. Since that initial phone call, my husband has been so supportive and positive, and I have had a couple of days of total crying, near hysteria. All probably normal though, I'm guessing.

Anyway, it was hard too to tell to people. My family was waiting for the results along with us, and when we got the call, I found that I didn't have the energy to call and explain it to everyone. I called my mom and asked her to relay the information to my brother, sister and dad. I think however you find you can deal with things is probably the right way for you. We just told my husband's family a couple of weeks ago because I felt like I needed time to deal with it a little on my own before dealing with other people trying to help and make me feel okay. If you can sit down with your friend and have an honest talk about how her healthy children have NOTHING to do with your son's diagnosis, it might help make her feel more comfortable around you. And keeping the support of your friends is probably important too. At least, I've found that it has been for me.

I had a couple of fleeting thoughts when we first found out about the CF and wondering, what if I had gotten pregnant a month earlier, or a month later, would we still be facing this? But now I feel so attached to this baby and connected, that I wouldn't change her for anything. (Don't get me wrong, if I could take away the CF, I would, but I feel like it's right that I'm having THIS particular baby.) Don't feel badly about these kinds of things, they're all part of the process I'm sure. I've had an extra six or seven weeks to come to terms with it, and you're still at the very fresh stage, so definitely give yourself some time.

Some advice that someone on this board gave me when we first found out about our daughter was to contact our local CF chapter. I emailed them on a Thursday evening and heard back on Friday. The director put me in touch with several local parents, and I can't even tell you what a comfort it was talking to them. Real people who have done what you are about to do! I would definitely encourage you to call your CF chapter when you're ready.

Feel free to email if you want to talk more. (mailho@comcast.net) ANd the last thing I wanted to say, (something that my sister-in-law told me) is that don't forget that you are going to have a beautiful baby, which is such a wonderful thing! It's so important to keep remembering that.

-- Jenica

 

[2sickkids]

Don't worry about the death thing. It does no good for you. I have a 2yr old and 8mo both have CF. They have taught me alot bout live and how stupid some people can be. Pregnant with my 2nd they kept telling to terminate. I was afraid I would lose him from all the stress. One doctor ever said I don't know why you would want to have a baby with CF. I flipped out on her I already had one with it. It seemed like she was saying because my kids weren't perfect they were worth nothing. Some days I think about it but anyone can die at anytime. My 8mo has lots of problems other then CF but I couldn't love him more.

 

[anonymous]

Jenica-
Has anyone recommended anything to you with regard to the rest of your pregnancy? Will you have a more advanced u/s? Will you delivery at the same hospital as originally planned?
My perinatologist recommended to my Primary Care Physician (we are military) that we have another u/s to check for bowel obstruction and they also recommended we deliver at there hospital. We don't have a specialist in our area, the closest is an hour away.
Jen

 

[anonymous]

I delivered my first baby at a Brigham and Womens, which is a major hospital in Boston, and I'll go back there for this one as well. It's about an hour away from me, but I wasn't really comfortable with the local hospitals for my older daughter, so I REALLY wasn't comfortable with them for this little one. From what I understand, they will be ready and prepared if there are any complications at birth (meconium illius - sp?). I had my regular 18 week ultrasound and it didn't detect anything abnormal in the bowels, but the technicial said that it will sometimes present itself later in the pregnancy, so it's still a possibility.

We are still waiting for our first appointment with the CF clinic at Children's Hospital. It was set for May 6th, which seemed an eternity away when we first got the diagnosis and tried to get an appointment, but it's coming up quickly now. I'm very anxious to talk to a doctor, since we have yet to talk to a medical professional about all of this. The genetics counselor where we had the CVS done gave us some general information, but she deals with all sorts of things, and CF is hardly a expertise of hers. Anyway, I'm really looking forward to that appointment and trying to get my list of questions ready. One of them is, is there anything I can do in pregnancy to help this baby? Would an extremely healthy diet be more important to this baby than for general pregnancies? I kind of doubt it, but I think it goes back to trying to have control over something about this disease.

-- Jenica

 

[anonymous]

Jenica-
One way I read about what you can do in your pregnancy is taking DHA. It is beneficial for those with cf and it can possibly help the baby as well.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[anonymous]

Thank you, Sharon! What is DHA and do you know how I can get it? Is it a supplement?

I haven't been able to find much of anything online regarding pregnancy with a CF baby. Thanks again, and any additional info would be great!

-- Jenica

 

[anonymous]

I found this article about DHA and GSH during pregnancy. Very interesting.
Jen

<a target=new class=ftalternatingbarlinklarge href="http://www.pregnancynutrition.info/pregnancy-glutathione/pregnancy-infection-inflammation.htm">http://www.pregnancynutrition.info/pregnancy-glutathione/pregnancy-infection-inflammation.htm</a>

 

[anonymous]

Jen,

Reading your post brought back a flood of feelings - I too found out in the middle of my pregnancy that my unborn child almost (this was 16 years ago so test results were more sketchy) definitely would have CF. After that, for the remainder of the pregnancy, I had both good days AND bad days emotionally. Some days I felt positive and assured that I would be able to handle whatever was in store; other days I felt very frightened and overwhelmed.

I also experienced the uncomfortableness of certain people (it was actually very interesting to see how people reacted - some reacted very differently from how I would have predicted). My ex's family began to act like I was no longer pregnant (never asked about the baby anymore, didn't want to have a shower, etc.)! Try to block out the negative vibes and spend alot of time with the positive people - it really does help a bit.

The emergency surgery is a possibility and is something you should discuss now with your doctor so you're prepared for the days following birth. I don't believe a CF baby dying at such an early age is very common so try not to think about something like that.

Diagnosis while pregnant puts a very big emotional strain on the expectant mom - if you don't feel like you're getting support from those around you or if you're just having a down day, you have us here. Write whenever you need support! You'll get through this!

 

[anonymous]

Hi,
When your baby gets here and you see its beautiful face and look into its eyes, you will forget all the pain. You will be so in love with your child that you will be filled with all the strength you need to take care of him/her. Good luck and you will be in my thoughts and prayers.

Lynsey -mom of Avery 20 mos. w/CF and Rhett 10 wks (still waiting for DNA results)

 

[anonymous]

Lynsey,
I hope you get good news on your DNA results. I don't know how you managed to wait till your baby was born. I could not find the strength to do it. I always love to hear from people who have been through what I'm going through and what I will go through. I do believe in what you say, I have great hope that it will all come together for me when the baby gets here. I just worry so much.
Thank you,
Jen

 

[anonymous]

Jen,

So sorry to hear about your news. Even though the treatment of CF has come a long ways, it's still a hard diagnosis to follow. If you don't mind me giving you a little advice: don't let this diagnosis and all of it's concerns take any priority over the time and love you'll give your baby. Just let yourself enjoy every minute. You son really does have a bright future. Hang in there. You're in my thoughts.

Carey

 

[2sickkids]

Good luck it is not as bad as the doctors make it seem.

 

[2sickkids]

And knowing ahead of time really does help.

 

[anonymous]

Why do so many doctors make it sound soooo bad? When I first told my doctor that my husband and I were known carriers he immediately asked me what I would do if the baby was diagnosed with CF and I very promptly told him we would continue the pregnancy. He then began to say things about the disease that kind of made me cringe, I won't go into detail. I understand as a physician he has to be upfront with me but I really felt like he was only giving me negative information and never once supported my decision to continue. I was really shocked by that because I already have a stepson with CF and I know the effects of the disease and they aren't that bad, granted they are not good but it could definately be worse. If I didn't know anything about CF after speaking with him I would probably have seriously considered termination. It just kinda made me feel like he has never really known anyone with CF and maybe he is just reciting his medical books. But, I don't know for sure, he is a good doctor.
Jen

 

[wuffles]

Jen, I'm very sorry to hear about the diagnosis of your baby but would also like to assure you that he will bring so much joy into your life! He will make you appreciate things so much more and life will be so much more sacred. I won't lie and say it's not hard [I'm the one with CF so I don't know exactly what my parents went through, but I can guess] but it's also not the end of the world. There have been and are CFers over the age of 70. There are those of us that live nearly normal lives. There are some of us that have fit into 10 years what others take 50 years to do. There are some that may be sick often, but wouldn't change their position if given the chance. I wish you the best of luck and hope you find lots of support here <img src="i/expressions/face-icon-small-smile.gif" border="0">