To take the 1 in 4 chance?

[candiebar76]

I have to say as a mother of 4 that the gift of loving the child is the best of all. I had complications with 3 of the four pregnancies. Maxwell our child in question possible CF was my only "normal" pregnancy and the largest, and healthiest of his 3 siblings. He was the only one that <b>did not</b> spend time in NICU. 3 of the 4 were also twins, however, I lost the twin durring the 2nd trimester with all three. Some would say I was selfish to continue to have children knowing I would not carry to term and having side effects of that passed on to the children, but loving and supporting them for the time we have together is what matters.

We are now facing the possibility of Maxwell having CF. He has had severe medical problems since shortly after birth when he quit absorbing the nutrients in his food. We almost lost him then. He has had varying illnesses throughout his 6 years of life, but we tough it out. As you will do regardless of your decision.

All I am trying to say is having a child is a game of chance. You take that same chance rather you adopt or have the child yourself. You know your possibilties of what your child may have if you carry them. However, there are many other medical, physical, mental problems that may present themselves later in life with an adopted child. There is no test around that can predict everything that could possibly go wrong.

Candace waiting for diagnosis, whatever it may be, on 1 child

 

[anonymous]

Definitely Deb, you sound like a fantasic mother.

Charlotte<img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Who cares what other paople say!!!! It does not matter! You do waht YOU want to do not what everyone else THINKS you should do! Life is already to hard! You can have HEALTHY children that get cancer and all other things! Just because your kid is born healthy does not mean a damn thing!! CF is a terrible disease and I wish my children and everyone else with CF did not have to deal with it. Reality is, is that children born today w/ CF have a good chance to live a long healthy life!

Take care!

 

[anonymous]

Hi Janet --

Thank you for your very kind words. I am in tears. Sometimes, it can be very hard to open your heart up and say what is on your mind because of the fear of rejection.

Like I said people with CF are amazing. Look at you, mother of 3, with one lung. That is unbelievable to me.

We all have a cross to bear and it is how we handle it that makes us who we are!! Wishing you the best!! Deb<img src="i/expressions/heart.gif" border="0">

 

[anonymous]

We have a 21 month old Aidan who was diagnosed at 8 days old much to our shock. We were devastated but life goes on and he is the best thing in our lives. A family friend also had a child with CF, decided to adopt two more to avoid CF. One of her adopted has major mental problems and has been having all kind of trouble. Life is a game of chance, you never know what will come your way- you just deal with it when you get it.

Having said that, we are not going to try again naturally. We feel we can keep Aidan healthiest by him being the only one affected. We just went though In Vitro with PGD. Unfortuantely our 4 embryos did not grow enough by Day 3 to test for PGD so we will try again. If that doesn't work out, them possibly donor sperm??

Megan, mom to Aidan 21 months CF and healthy as a horse!

 

[anonymous]

hey im shona age 12 and i got cf
my mum and dad were exactly the same but they took the risk and it turns out my lil sister isnt like me because she dont have cf . pretty much what im trying to say is you`ll never know till you take the risk. and if you do have a child with cf then i`d feel happy either way because you have just a living being into the world no matter what they look like or how they are you will always love them and at least you lil girl would have someone to go through everything with. no affence but a parent can never understand how there child feels i mean i know you will always be there and that but your girl really needs another cf 2 talk to like i did thats y i came on here i meen i know lots of kids that have cf and even though were not suppose to mix im really good mates with them and they helped me and i helped them. its hard to explain how you feel when you dont know anyone else with cf it feels like your alone in the world even when your family is right beside you. i dont mean to worry you but there are certain things that my mum would love to have none before she had me but theres only 1 way to learn !!!

 

[anonymous]

Megan,

We have a 17 month old with CF and his name is Aiden as well. We found out he was going to have CF when I was pregnant. Through standard blood test I found out I was a carrier and then my husband got tested only to find out he was also a carrier. So we could be prepared, I had an amneo to find out if Aiden was going to actually have CF. With the exception of culturing positive to pseudonomas he has been pretty healthy (so far).

My husband and I want another child, but don't want to take the 1 and 4 chance so we are starting to look into IVF with PGD as well. If you don't mind me asking, were you able to get insurance to cover the procedure?

Tabitha, mom to Aiden 17 months with CF

 

[anonymous]

Hi Tabitha. We are still fighting insurance on it. Our IVF cycle is covered however PGD was denied. Some insurance plans are beginning to cover it as they see the cost effectiveness of paying for PGD vs paying for another CFer. PGD is not the most expensive part of the whole thing- it is IVF. We only paid around $4300.00 for PGD -something like that. Again, it did not work the first time (we actually never made it to the PGD part) but we will try again.

Our Aidan has been great so far as well. Sinus surgery in the winter with a PICC but since then he has been amazing- over 30 pounds at 20 months old! We are taking him to Dr Warwick in Minnesota in July for a consult. Good luck with your future endeavors, If you want more info on the PGD doctor we are using, please don't hesitate to ask!

Mega, mom to Aidan 21 months (Double Delta and doing great!)

 

[julie]

Mega,

can I inquire... did you not have enough eggs to retrieve or did they not fertilize well or did the PGD cause problems? I'm just curious as I am so fascinated by IVF and all things related.

I wish you luck with your upcoming IVF endeavors, I'm currently pregnant with triplets via IVF so if you need someone to chat to, feel free to PM or email me.
division902@hotmail.com

 

[AUNTMARLA]

I'm sorry - but I disagree with taking the risk.. My brother had two children and both were born with CF.. (one worse then the other)

The decision you say you are making is not for you to live with, it's the decision your child will have to live with. It's the children who actually live the disease. Our suffering is emotional as we watch and support them.

But that's just my personal opinion.

God Bless you and your family in whatever you decide.
Aunt Marla

 

[AUNTMARLA]

I'm sorry - but I disagree with taking the risk.. My brother had two children and both were born with CF.. (one worse then the other)

The decision you say you are making is not for you to live with, it's the decision your child will have to live with. It's the children who actually live the disease. Our suffering is emotional as we watch and support them.

But that's just my personal opinion.

God Bless you and your family in whatever you decide.
Aunt Marla

 

[AUNTMARLA]

I'm sorry - but I disagree with taking the risk.. My brother had two children and both were born with CF.. (one worse then the other)

The decision you say you are making is not for you to live with, it's the decision your child will have to live with. It's the children who actually live the disease. Our suffering is emotional as we watch and support them.

But that's just my personal opinion.

God Bless you and your family in whatever you decide.
Aunt Marla

 

[Darinsmom]

We have a 9 year old son with CF and were thinking about a 2nd. It took 7 years of exploring other options and praying. We just decided to try it naturally and our 2nd son does not have CF! It is a scary decision and we made this choice by the peace of God had in our hearts. Our son 9 yr. old is healthy so that helped to in making a decision. And there is SO MANY treatments coming up through the pipelines that will help people with CF and it's so encouraging! We are thinking about a 3rd and if it's God will be will get pregnant again and if we don't then that's fine too. Best of luck in your decision!

Laurie

 

[Darinsmom]

We have a 9 year old son with CF and were thinking about a 2nd. It took 7 years of exploring other options and praying. We just decided to try it naturally and our 2nd son does not have CF! It is a scary decision and we made this choice by the peace of God had in our hearts. Our son 9 yr. old is healthy so that helped to in making a decision. And there is SO MANY treatments coming up through the pipelines that will help people with CF and it's so encouraging! We are thinking about a 3rd and if it's God will be will get pregnant again and if we don't then that's fine too. Best of luck in your decision!

Laurie

 

[Darinsmom]

We have a 9 year old son with CF and were thinking about a 2nd. It took 7 years of exploring other options and praying. We just decided to try it naturally and our 2nd son does not have CF! It is a scary decision and we made this choice by the peace of God had in our hearts. Our son 9 yr. old is healthy so that helped to in making a decision. And there is SO MANY treatments coming up through the pipelines that will help people with CF and it's so encouraging! We are thinking about a 3rd and if it's God will be will get pregnant again and if we don't then that's fine too. Best of luck in your decision!

Laurie

 

[1sttimemommie]

I am a 29 year old black female and I've just found out at 20 weeks pregnant that I'm a carrier of the cystic fibrosis gene. I'm now going on 22 weeks. NO ONE in my family has ever had the disease, and no one has had the disease on the father's side (he's black also).

The father of the baby is trying to bail out of his responsibility and doesn't want anything to do with me or the baby now. The doctor called him to get tested for the gene so I would know what to do and he refused. That is so cold and heartless and I am deeply upset, more so upset that my child may have to live with an illness and I'm not mentally prepared to deal with it. So, I don't know if the baby has a chance of having CF or not. Plus, by the time the results get back, I wouldn't be able to terminate. Truthfully, I don't know if I could terminate at this point, being as though this is my 1st and probably last chance at having a child. I declined on getting an amnio because, I wouldn't be able to terminate, and I wouldn't want to risk thaving a miscarriage. I've been so stressed out over what the baby's father put me thru and the risk of CF that I'm afraid an amnio would cause a miscarriage for sure.

I just need some advice on what to do. I'm so scared...all my life I wanted a child...a healthy child...and my 1st and maybe last child may be stricken with a deadly disease. Someone please give me some advice on what I should do? Also, prayers would help as well!

God Bless U All!

1st Time Mommie

 

[1sttimemommie]

I am a 29 year old black female and I've just found out at 20 weeks pregnant that I'm a carrier of the cystic fibrosis gene. I'm now going on 22 weeks. NO ONE in my family has ever had the disease, and no one has had the disease on the father's side (he's black also).

The father of the baby is trying to bail out of his responsibility and doesn't want anything to do with me or the baby now. The doctor called him to get tested for the gene so I would know what to do and he refused. That is so cold and heartless and I am deeply upset, more so upset that my child may have to live with an illness and I'm not mentally prepared to deal with it. So, I don't know if the baby has a chance of having CF or not. Plus, by the time the results get back, I wouldn't be able to terminate. Truthfully, I don't know if I could terminate at this point, being as though this is my 1st and probably last chance at having a child. I declined on getting an amnio because, I wouldn't be able to terminate, and I wouldn't want to risk thaving a miscarriage. I've been so stressed out over what the baby's father put me thru and the risk of CF that I'm afraid an amnio would cause a miscarriage for sure.

I just need some advice on what to do. I'm so scared...all my life I wanted a child...a healthy child...and my 1st and maybe last child may be stricken with a deadly disease. Someone please give me some advice on what I should do? Also, prayers would help as well!

God Bless U All!

1st Time Mommie

 

[1sttimemommie]

I am a 29 year old black female and I've just found out at 20 weeks pregnant that I'm a carrier of the cystic fibrosis gene. I'm now going on 22 weeks. NO ONE in my family has ever had the disease, and no one has had the disease on the father's side (he's black also).

The father of the baby is trying to bail out of his responsibility and doesn't want anything to do with me or the baby now. The doctor called him to get tested for the gene so I would know what to do and he refused. That is so cold and heartless and I am deeply upset, more so upset that my child may have to live with an illness and I'm not mentally prepared to deal with it. So, I don't know if the baby has a chance of having CF or not. Plus, by the time the results get back, I wouldn't be able to terminate. Truthfully, I don't know if I could terminate at this point, being as though this is my 1st and probably last chance at having a child. I declined on getting an amnio because, I wouldn't be able to terminate, and I wouldn't want to risk thaving a miscarriage. I've been so stressed out over what the baby's father put me thru and the risk of CF that I'm afraid an amnio would cause a miscarriage for sure.

I just need some advice on what to do. I'm so scared...all my life I wanted a child...a healthy child...and my 1st and maybe last child may be stricken with a deadly disease. Someone please give me some advice on what I should do? Also, prayers would help as well!

God Bless U All!

1st Time Mommie

 

[amysmom]

We also struggled with this question - to have another baby and risk the CF diagnosis. Our daughter is 26 years old now and we didn't have a second child. Looking back, it was a blessing because the guilt I would have had knowing I brought a baby into this world that would suffer and cry in pain, etc., would have been so awful I don't know how I would have lived with it.

 

[amysmom]

We also struggled with this question - to have another baby and risk the CF diagnosis. Our daughter is 26 years old now and we didn't have a second child. Looking back, it was a blessing because the guilt I would have had knowing I brought a baby into this world that would suffer and cry in pain, etc., would have been so awful I don't know how I would have lived with it.