Second Child??

S

SARAHSARAH253

New member
I also struggled with this after the birth of our son. He was our first born, and it was devastating. I envied others who had other children before their cf diagnosis. They didn't have to make this decision. My husband and I visited a local PGD office, but did not feel that it was the right choice for us. We did lot's of soul searching! We decided that we would have one more. I knew in my heart that it would be our last child though. I knew my hand and would be full regardless if the 2nd child did or didn't have CF. When I became pregnant with our second we decided not to test the baby until after she was born. It was a very long 9 months and 6 weeks for the results. My daughter tested negative for CF. Huge relief, but CF is still part of her world. I have extreme empathy for parents facing this hard decision. I respect each CF Families choices, and know that no family is alike. No CF experience is alike. I understand that my decision may be viewed as completely ignorant. I understand the criticism. I also know what was in my heart. I made the best decision for us. My son loves his little sister more than anything in the world, and this brings me more joy than I can possibly describe in words. I wish you strength and peace no matter what you decide.

Sarah
Mommy to Johnny Almost 5 w/cf and Bailey 2 no/cf
 
S

SARAHSARAH253

New member
I also struggled with this after the birth of our son. He was our first born, and it was devastating. I envied others who had other children before their cf diagnosis. They didn't have to make this decision. My husband and I visited a local PGD office, but did not feel that it was the right choice for us. We did lot's of soul searching! We decided that we would have one more. I knew in my heart that it would be our last child though. I knew my hand and would be full regardless if the 2nd child did or didn't have CF. When I became pregnant with our second we decided not to test the baby until after she was born. It was a very long 9 months and 6 weeks for the results. My daughter tested negative for CF. Huge relief, but CF is still part of her world. I have extreme empathy for parents facing this hard decision. I respect each CF Families choices, and know that no family is alike. No CF experience is alike. I understand that my decision may be viewed as completely ignorant. I understand the criticism. I also know what was in my heart. I made the best decision for us. My son loves his little sister more than anything in the world, and this brings me more joy than I can possibly describe in words. I wish you strength and peace no matter what you decide.

Sarah
Mommy to Johnny Almost 5 w/cf and Bailey 2 no/cf
 
A

Anomie

New member
My daughter who has cf really wants a brother or sister but I refuse to risk having another child born with cf. Even if we could make sure the second child was healthy then I would fear the resentment my daughter would feel towards it for having to be the sick one. At the same time I would worry about how the second child would turn out growing up in a home where the attention is always paid to the sick one. If you really want a second child that badly then test the fetus in utero and be prepared to terminate the pregnancy if they're positive. Choosing to bring a sick child into the world so they can suffer a horrible disease their entire life is just inhumane.
 
A

Anomie

New member
My daughter who has cf really wants a brother or sister but I refuse to risk having another child born with cf. Even if we could make sure the second child was healthy then I would fear the resentment my daughter would feel towards it for having to be the sick one. At the same time I would worry about how the second child would turn out growing up in a home where the attention is always paid to the sick one. If you really want a second child that badly then test the fetus in utero and be prepared to terminate the pregnancy if they're positive. Choosing to bring a sick child into the world so they can suffer a horrible disease their entire life is just inhumane.
 
J

Justinsmom

New member
Harriett,

I read your story and it sounds so familiar. My son Justin was a happy, chubby baby. He had other health issues, but CF was never a thought. At 6 things changed for us too. He had been lowish on the growth side (25% for height and hung for a while at 15%ish for weight) but during his 6-7 year, he dropped below 3% for BMI and litterly was starving. He became severely mal-nutritioned. At 7 the lung side started, and was diagnosed on February 16th of this year, 7 years and 5 months old. He too, has one unknown mutation. He has had 4 infections since November.
I am so thankful to be able to participate in this forum and be able to read the experiences of others that have "been through" it. While I do not want to be negative about his future, I also can not fool myself into believing that our path will be unaffected now that he has a diagnosis and treatment. Much better now, but we still will have obsticles to overcome. Your insight, as well as others, it helpful to those of us that have not "walked the path" nearly as long or as far.

Thank you all.
 
J

Justinsmom

New member
Harriett,

I read your story and it sounds so familiar. My son Justin was a happy, chubby baby. He had other health issues, but CF was never a thought. At 6 things changed for us too. He had been lowish on the growth side (25% for height and hung for a while at 15%ish for weight) but during his 6-7 year, he dropped below 3% for BMI and litterly was starving. He became severely mal-nutritioned. At 7 the lung side started, and was diagnosed on February 16th of this year, 7 years and 5 months old. He too, has one unknown mutation. He has had 4 infections since November.
I am so thankful to be able to participate in this forum and be able to read the experiences of others that have "been through" it. While I do not want to be negative about his future, I also can not fool myself into believing that our path will be unaffected now that he has a diagnosis and treatment. Much better now, but we still will have obsticles to overcome. Your insight, as well as others, it helpful to those of us that have not "walked the path" nearly as long or as far.

Thank you all.
 
R

Ratatosk

Administrator
Staff member
DH and I waited until we were older to have children -- mid/late 30s. We intended to have two. DS was born with a bowel obstruction and spent 6 weeks in the NICU.

We thought long and hard about having another child -- we didn't want to risk having another child wcf as we know a number of people who took the chance and had one or two more children wcf as well. Adoption -- we're older, so chances of getting a baby were nil, money involved, plus we didn't want to have to care for another child with possible special needs -- fetal alcohol syndrome, etc. We thought about PGD, but weren't so sure we wanted to spend that kind of money -- decided we'd rather spend the money on DS.

Because DS is an only child we make sure he spends a lot of time with family --- cousins, aunts and uncles. His favorite cousins he says are just like having a sister and brother.

While we would've have loved for him to have a sibling, for us personally, it wasn't worth the risk. DS' health has been relatively stable, but we all know CF is a progressive disease and things can go bad in an instant.
 
R

Ratatosk

Administrator
Staff member
DH and I waited until we were older to have children -- mid/late 30s. We intended to have two. DS was born with a bowel obstruction and spent 6 weeks in the NICU.

We thought long and hard about having another child -- we didn't want to risk having another child wcf as we know a number of people who took the chance and had one or two more children wcf as well. Adoption -- we're older, so chances of getting a baby were nil, money involved, plus we didn't want to have to care for another child with possible special needs -- fetal alcohol syndrome, etc. We thought about PGD, but weren't so sure we wanted to spend that kind of money -- decided we'd rather spend the money on DS.

Because DS is an only child we make sure he spends a lot of time with family --- cousins, aunts and uncles. His favorite cousins he says are just like having a sister and brother.

While we would've have loved for him to have a sibling, for us personally, it wasn't worth the risk. DS' health has been relatively stable, but we all know CF is a progressive disease and things can go bad in an instant.
 
K

kitomd21

New member
We always planned on having more than one child...found out we were carriers while pregnant with our first child. We didn't do CVS or amnio because our son was our child - CF or not. We met with a genetic counselor (what a waste of time) who proceeded to inform us that we carry "the worst" form of CF and pushed for an amnio - as if to encourage abortion if our son was positive. As you may already know - there is no "worst" form to carry. A more appropriate term would be the more "classic" form of which there is great variation in terms of severity (see the thread about being homozygous dd508 for example). There are no guarantees with this disease.

I agree with the position that it's a personal choice. You will find individuals with CF on this site that wouldn't change their life because CF has made them who they are...though nobody would choose this disease. You will find others who shame parents for having another child given what they've gone through. Everyone speaks of what a wonderful time this is for individuals with CF - treatments in the pipeline, treatments meeting approval...but, again, there are no guarantees. Many have seen promising drugs come and go but CF persists. We do know that individuals are living longer...yet some are still dying young.

It's a difficult decision. Time. Money. Emotions. The list goes on and on. I'll just add that we're happy. We love each other...we're grateful for every moment we have...we laugh...we get sad...but in the end - I love all that my family is and will become.
 
K

kitomd21

New member
We always planned on having more than one child...found out we were carriers while pregnant with our first child. We didn't do CVS or amnio because our son was our child - CF or not. We met with a genetic counselor (what a waste of time) who proceeded to inform us that we carry "the worst" form of CF and pushed for an amnio - as if to encourage abortion if our son was positive. As you may already know - there is no "worst" form to carry. A more appropriate term would be the more "classic" form of which there is great variation in terms of severity (see the thread about being homozygous dd508 for example). There are no guarantees with this disease.

I agree with the position that it's a personal choice. You will find individuals with CF on this site that wouldn't change their life because CF has made them who they are...though nobody would choose this disease. You will find others who shame parents for having another child given what they've gone through. Everyone speaks of what a wonderful time this is for individuals with CF - treatments in the pipeline, treatments meeting approval...but, again, there are no guarantees. Many have seen promising drugs come and go but CF persists. We do know that individuals are living longer...yet some are still dying young.

It's a difficult decision. Time. Money. Emotions. The list goes on and on. I'll just add that we're happy. We love each other...we're grateful for every moment we have...we laugh...we get sad...but in the end - I love all that my family is and will become.
 
J

jessykt

Guest
That's terribly sad, Anomie. Once a life is a life, it shouldn't be taken away. If you want to PREVENT one, then fine. But when you want to KILL one, that's just a sad, sad story.
 
J

jessykt

Guest
That's terribly sad, Anomie. Once a life is a life, it shouldn't be taken away. If you want to PREVENT one, then fine. But when you want to KILL one, that's just a sad, sad story.
 
L

LouLou

New member
I don't think this has been contributed to the convo yet but I just wanted to add that even if the second doesn't have cf they could turn the world upside down for your cf child's health world. It may have happened anyway for cf child but will you always blame yourself for bringing that baby into the household who may have caused the decline of the cf child?

So many things to think about.
Myself and my son have cf (dispite my husband testing negative as a carrier on an screening test that tested for the mutations that covered 95% of the incidence of cf)

- I just have to keep reminding myself that it is a miracle that I have one.
- I never ever dreamed of having two before I had my first.
- I want to live as long as possible and having another baby can only hurt this wish.
- I think wanting babies is very biological and the urge to pro-create has our mind warped a bit. Add being educated and this puts us at a disadvantage because let's face it we may over think it because we have too much knowledge.
- I think most people would love to have many children so don't think that you are unique. Most women I know (w/o cf) have had a difficult time knowing they needed to stop making babies.
 
L

LouLou

New member
I don't think this has been contributed to the convo yet but I just wanted to add that even if the second doesn't have cf they could turn the world upside down for your cf child's health world. It may have happened anyway for cf child but will you always blame yourself for bringing that baby into the household who may have caused the decline of the cf child?

So many things to think about.
Myself and my son have cf (dispite my husband testing negative as a carrier on an screening test that tested for the mutations that covered 95% of the incidence of cf)

- I just have to keep reminding myself that it is a miracle that I have one.
- I never ever dreamed of having two before I had my first.
- I want to live as long as possible and having another baby can only hurt this wish.
- I think wanting babies is very biological and the urge to pro-create has our mind warped a bit. Add being educated and this puts us at a disadvantage because let's face it we may over think it because we have too much knowledge.
- I think most people would love to have many children so don't think that you are unique. Most women I know (w/o cf) have had a difficult time knowing they needed to stop making babies.
 
S

Swallowtail66

Guest
I am 45 years old and when I look at a baby, I want one. I look at my husband and want to know what having a baby with him would be like. It is a natural biological desire to have babies. I had my first child when I was 23. I became pregnant the next year and miscarried. I always think of that child in April when it should have been born. He or she would be turning 20 this month. I had my second child at 31. It was a difficult pregnacy and both of us suffered horribly. We made it 36 weeks, but my health never totally recovered. She has had problems from 14 weeks gestation. Abortion was not for me so no matter what the doctors said I persisted in staying pregnant. However, she had surgeries and long hospital stays. Life for us changed at the most fundamental level. I became her nurse. As the children got older, their medical experiences became more and more similar. I wanted more babies and their dad did as well, but I knew in my heart that there was a genetic disorder at work. My children had my symptoms, only much worse. At age 34 I had a tubal ligation so I could never do this to another child. At 13, 6, and 37, we were all diagnosed with CF. Their dad and I divorced (many other problems besides the huge stress of CF, but it was an issue) He has remarried and has a new family. Now he doesn't want to provide medical care for this family. I worry about staying healthy enough to provide financially, medically, and emotionally for my girls. When I am sick, I have to keep going for them. I fear them dying and leaving me. Worse, I fear me dying and leaving them. Who will see them through the worst if not me? My oldest idaughter s dating a man who is going through the process to see if he is a carrier and if they can have babies because she has decided that she would rather not have children than give her child her disease. My children don't blame me for CF, but they have both had times when they thought they would rather be dead than living with CF. It is very hard when they don't value the life I have fought so hard to maintain. I have a friend who found out during her pregnancy that she and her husband both carry DF508. That child is not even a carrier. They are thinking about having another child. My advice to her was that life is sweet now, but could change radically with the next child. No one can tell you what to do, only what they did. I love my girls and a huge part of me is glad that I didn't know about the CF before they were born. Most of me wishes that I could go back and choose to be a motherless woman to save two girls lots of misery. Whatever you do, think long and hard and be ready to stand together by your decision. Decisions last a lifetime.
 
S

Swallowtail66

Guest
I am 45 years old and when I look at a baby, I want one. I look at my husband and want to know what having a baby with him would be like. It is a natural biological desire to have babies. I had my first child when I was 23. I became pregnant the next year and miscarried. I always think of that child in April when it should have been born. He or she would be turning 20 this month. I had my second child at 31. It was a difficult pregnacy and both of us suffered horribly. We made it 36 weeks, but my health never totally recovered. She has had problems from 14 weeks gestation. Abortion was not for me so no matter what the doctors said I persisted in staying pregnant. However, she had surgeries and long hospital stays. Life for us changed at the most fundamental level. I became her nurse. As the children got older, their medical experiences became more and more similar. I wanted more babies and their dad did as well, but I knew in my heart that there was a genetic disorder at work. My children had my symptoms, only much worse. At age 34 I had a tubal ligation so I could never do this to another child. At 13, 6, and 37, we were all diagnosed with CF. Their dad and I divorced (many other problems besides the huge stress of CF, but it was an issue) He has remarried and has a new family. Now he doesn't want to provide medical care for this family. I worry about staying healthy enough to provide financially, medically, and emotionally for my girls. When I am sick, I have to keep going for them. I fear them dying and leaving me. Worse, I fear me dying and leaving them. Who will see them through the worst if not me? My oldest idaughter s dating a man who is going through the process to see if he is a carrier and if they can have babies because she has decided that she would rather not have children than give her child her disease. My children don't blame me for CF, but they have both had times when they thought they would rather be dead than living with CF. It is very hard when they don't value the life I have fought so hard to maintain. I have a friend who found out during her pregnancy that she and her husband both carry DF508. That child is not even a carrier. They are thinking about having another child. My advice to her was that life is sweet now, but could change radically with the next child. No one can tell you what to do, only what they did. I love my girls and a huge part of me is glad that I didn't know about the CF before they were born. Most of me wishes that I could go back and choose to be a motherless woman to save two girls lots of misery. Whatever you do, think long and hard and be ready to stand together by your decision. Decisions last a lifetime.
 
A

Anomie

New member
What you guys are talking about doing is like knowingly giving someone AIDs. Forcing them to endure a fatal disease for your own benefit. I think that some of you parents on here with young cf children are oblivious to the cruelty of this disease in the advanced stages. Discarding a clump of embryonic cells with no name, personality and which you have no emotional attachment to is alot different than watching a child you've raised and loved their entire life slowly waste away from an illness that destroys vital organs.

Somebody on this thread said to "go ahead and go for it because god wouldn't give you more than you can handle". Please accept that your child's condition was a random act of nature and not the will of some omnipotent being. God didn't give your child cystic fibrosis. You gave your child cystic fibrosis. And just because they only had a 1 in 4 chance of inheriting the disease doesn't mean that your next three kids probably won't get it. Each one of your children has a 25% chance of being born with cf regardless of whether their syblings have it or not. Its a simple mathematical concept that no amount of praying can change. So stop shifting the blame to your imaginary friend and take some personal responsibility for the suffering you cause in the world.
 
A

Anomie

New member
What you guys are talking about doing is like knowingly giving someone AIDs. Forcing them to endure a fatal disease for your own benefit. I think that some of you parents on here with young cf children are oblivious to the cruelty of this disease in the advanced stages. Discarding a clump of embryonic cells with no name, personality and which you have no emotional attachment to is alot different than watching a child you've raised and loved their entire life slowly waste away from an illness that destroys vital organs.

Somebody on this thread said to "go ahead and go for it because god wouldn't give you more than you can handle". Please accept that your child's condition was a random act of nature and not the will of some omnipotent being. God didn't give your child cystic fibrosis. You gave your child cystic fibrosis. And just because they only had a 1 in 4 chance of inheriting the disease doesn't mean that your next three kids probably won't get it. Each one of your children has a 25% chance of being born with cf regardless of whether their syblings have it or not. Its a simple mathematical concept that no amount of praying can change. So stop shifting the blame to your imaginary friend and take some personal responsibility for the suffering you cause in the world.
 
You must log in or register to reply here.
Top