help with decisions about future children???

[djmharwell]

I am hoping that you all can help my husband and I with a very difficult decision. We have a two year old daughter, Madeline. During my pregnancy with her, we found out that we were both carriers - with different mutations of the CF gene. Fortunately, Madeline is healthy and is only a carrier. She doesn't have CF. Lately, the desire for more children has become very strong for my husband and I. We are having such difficulty knowing what to do - have a biological child or adopt. I just don't know what to do with the knowledge that we are both carriers. Is it selfish for us to desire another biological child knowing that we could be causing it to have this lifelong disease to battle with? We are Christians and we feel that God gave us this information for a purpose. We just can't figure out if the purpose is to trust him and accept that He may have a CF child that He wants us to raise, or if the purpose is to take this information and adopt children who need a good, loving family. I also don't know if risking a sick child is fair to Madeline. My husband and I don't know much at all about CF - just some information that a genetic counselor gave to us. The information has been so inconsistent, though. I really don't know what to do or to expect if a new baby would get a diagnosis of CF. If anyone knows of a place or person around the St. Louis area that we might go to to gain some more knowledge for our decision, I would greatly appreciate you telling me about it. I would also really appreciate hearing your opinions about our situation. Thanks so much.

 

[Allie]

My husband and I had concerns about CF when we wanted a child, and we adopted our darling daughter Ahava. I think adoption is wonderful, because you're locing a child someone else didn't want. And if you are anti-abortion also, you can think of it as saving a child from that.

I think adopting a child would be a wonderful way to go. You really might want to look into it. you wouldn't have the concern of Cf, and you could know that you were opening your heart to an unwanted child. We opened our heart to any child the lord gave us, black or white or anything. And we were so blessed with an absolutely perfect daughter that I know God had intended for us.

I hope you can come to some sort of happy decision.

 

[WinAce]

I don't suggest messing with the illness. Best case scenario, you'll create a child whose only advantage over an adopted one (who'll continue to languish in an orphanage), is similar molecules to your own body.

By adopting, you'll give an already-existing kid who undeniably deserves it a loving home. You won't contribute to the overpopulation problem, and you won't risk the worst-case scenario of bringing into the world a child largely destined for being a medical guinea pig.

 

[Seana30]

<P><FONT size=4><STRONG><EM>There has been a lot of discussion about this issue lately.  I just wanted to say that I was adopted.  There are 5 siblings in my family, 2 of us adopted.  There was NEVER a time that I felt "bad" about being adopted.  If nothing else it made me feel special, like my parents had hand picked me.Please don't get me wrong, I am not telling you which way you should go, but I did just want to state that adoption can be a wonderful thing!!Seanamom to Lauren, 14, no CF - Courtney, 13, - with CF  Cameron, 10, - no CF</EM></STRONG></FONT></P>

 

[Dea]

Hi,
I am 32 w/CF and went to St.Louis Childrens as a child and now go to Barnes Jewish as an adult. I can help you with the St.Louis area. Ihave a question too...about your last name...is it Harwell? That was my maiden name...we are in southern Illinois.
Dea

 

[anonymous]

From what I understand if you both are carriers, you have a 25% chance of each child having CF. You can either take those odds and trust God's will or choose not to chance it & adopt. Either way I'm sure you've made the right decision for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

To Dea,

Thanks for your reply. Yes, Harwell is my last name. We're in the Crystal City, MO area now and my husband and his family are from just south of St. Louis. You never know - maybe there's some relation there!!

 

[anonymous]

This is a hard decision. Even with adoption, there are no guarentees. I know of a family who adopted overseas this year. They went over, met their daughter-to-be, fell in love with her, had to leave without her (paperwork stuff) for a month and just before they were due to bring her home, they were told that she was just diagnosed with Cystic Fibrosis! They already knew she was meant to be there daughter and added her to their family but this just goes to show that things are not ever guarenteed.

Anyway, there are embryo adoption programs out there if you really want to be pregnant again.

I prayed and prayed over this same thing and felt that God really put it on my heart to focus on the (amazing) child (with CF) that I DO have, rather than spend time worrying/wondering about the child that I don't have. It was a wonderful burden off my shoulders and for once I was HAPPY with the thought of only having one child! Months later I found out I was pregnant, had/have really mixed feelings about it since we were NOT trying to get pg but I try to find peace in feeling that it is God's plan...since it surely wasn't mine.

Hope some of this helps you and your husband find peace in your situation.

Oh ya, I was adopted. I am VERY different from both of my parents (adoptive, well actually different than my bio parents too-thank goodness) but I love them and they love me - to me, that is what family is all about.

 

[anonymous]

Hello Friends-

I apologize in advance for what I am saying... I personally am very insulted by what I have read in this thread. I have CF and consider myself to be very healthy, happy, worthwhile, and a productive member of society. I am glad that I was born and that my sister was born (also has CF.) I am also happy that I wasn't aborted. You CAN have CF and live the greatest life in the world....Don't be so damn close-minded and stupid. Thank you.

 

[WinAce]

We're speaking hypotheticals here, not arguing you should be retroactively aborted. (You're the first one on the thread who's even brought it up.)

 

[anonymous]

Thank you, Dr. I understand your point, and it comes to this....When you decide to have a child, you are deciding to raise a person. You need to accept it all... the good, the bad, and the ugly. Nobody is perfect-that's the way it is.

 

[anonymous]

Dear Original Poster

You have stated that you and your husband are Christians, we are here to procreate and as you already know children are wonderful. Alot of people do not like to hear that God only gives us what we can handle but i truly feel that way, obviously as Christians you know that the Lord already knows if your child will be born with CF or not. After my daughter was born with CF, my husband and i had another child and she does not have CF and she isn't even a carrier, I understand that this is not always the circumstance but my point is we knew the chances of our child being born with CF. Some people feel that if you know your chances than you should take precautions and not have any more children with this disease. I feel that no one is promised a perfect baby and as far as i know there has only been one perfect being. I also feel that adoption is great, i do not have any adopted children but would love to adopt a child, and if i found out later that my adopted child has CF or cancer or any other disease than i guess i was meant to be the person to take care of the child and give them the best life i could possibly give. I did let CF stop me from having anymore children ( after my last child i had a tubal ) one thing that i truly regret and always will . I can only hope and pray that CF never stops my daughter in any decisions or any thing that she wants in her life.

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

 

[anonymous]

TO the anonymous poster- she's not speaking of aborting a child, she's speaking of choosing not to concieve another. That's a very different situation, and I one I thought would be wouldn't be so rife with controversy.

My personal feeling is that Mrs. Harwell, you would be making a very unselfish and mature desicion by adopting instead of having another child. I've always felt that adoption was a way of fulfilling God's commandment to care for the orphan child. it's a sacrifice many women don't want to make, not to have thier 'own' children, but I can tell you from the moment they place that baby in your arms, he or she is YOURS. In every way. I knew a family through Ry that had 4 children, 3 with CF, and I always felt that they were slightly irresponsible to keep doing that. Not that thier children were'nt wonderful, they were, but I ached for the pain they went through that thier parents would never understand or know. As I don't truly, but I have seen the very ugly and horrible side of the disease. I was never so happy that I chose not to have my own children as after the death of my husband.

You will love an adopted child as your own. Believe me, there is no way I could possibly lov emy daughter more. She has me wrapped around her little finger. lol.

 

[Allie]

^ that was me

 

[anonymous]

To the OP,
I was in a similar situation. My husband and I discovered we were both carriers when I was pregnant with my 3 year old. Thankfully she only got one gene and is only a carrier.
However, I accidently got pregnant again in December/04 and we found out after an amnio that our unborn child had CF. We know a lot about it as my step-son has it and he is eleven so we did have that advantage. I did consider the option of terminating the pregnancy, I knew it was something I couldn't go through with, but it did cross my mind. But, by this time I was already in love with him and that was that.
Andrew had a blockage noticed during u/s that would eventually almost cost him his life, and did cost him his quality of life. He has cerebral palsy due to a lack of oxygen at birth. His bowel ruptured prior to birth which caused him to go into distress.
You mentioned you are not very familiar with CF and have recieved conflicting information, well it has a lot of different degress, with some cases much worse than others.
Before you consider getting pregnant in my opinion you should accept that your child may very well be born with CF and suffer a life time of hospitalizations and chronic health problems and it is not a pretty picture I don't care who tries to say it is, it's ugly.
I love my step-son very much but I hate watching him go through all that he does, it is so unfair to him. Don't get me wrong, we wouldn't trade him or Andrew for anything in this world, but I'm not going to pretend that his life is fantastic and he is unaffected by this nightmare known as CF. He goes through alot, has been in the hospital 10 times now, since birth. He has intestinal issues and lung problems (psudomonis) sp?, he has problems gaining wait, but overall I think he is probably considered one of the more healthier kids.
I think it is easy for people who don't know CF that well to think it's not that bad, because people with CF look perfectly normal from the outside, but inside is a totally different story. Just please understand that CF is a major health problem and unfortunately a cure may not be as close as we hope.
Jen

 

[anonymous]

But also know that many people (esp. youngsters) do not have all of the problems that the pwcf that were born 15+ years ago do. Many CF kids don't show any major symptoms until they are in their teens now. Thanks to the wonderful meds now being used (and more coming in the future!) many pwcf are able to stay out of the hospital for years at a time. There are links to webcasts on CFF.org that show the changes in overall CF health that have taken place, they are very interesting for anyone who wants to learn more.


Not trying to downplay CF at all, just sharing that things are changing, and advances in CF care are/have been made over the past years and there is a LOT of hope for those who are born now with CF.