(Closed) Chronic Bees: having children when diagnosed with a Genetic Disease

posted 5 years ago in Wellness
Post # 3
8576 posts
Bumble Beekeeper
  • Wedding: October 2014

I don’t have any genetic disease, but I do know exactly how you feel.


I had my daughter premature, because she was premature she had SO many problems, including gastointestinal [including having to get portions of her intestine removed & having a g-tube for feeding], bleeding in the brain, underdeveloped lungs, and she was on oxygen, even when she came home.


She passed away when she was 9 months old.


I was completely healthy – I’ve never drank or did drugs, I was perfect weight. They have NO idea what happened, but the lining in my uterus started thinning and pretty much exploded – I died 3 times in the helicopter while being lifelined to a state of the art children’s hospital.


They did an emergency c-section, but kept me awake. They actually asked my ex in the event that they couldn’t save both of us, who they should save [Everytime they would reach in to get her, I would flatline, and when they stopped, she would flatline]. They were able to get her out, and get me stable after awhile. They checked all my organs trying to find out what the hell happened [as well as drug tests, and all kinds of other tests].


They never had an answer, they just called it one of those tragic accidents that happen to good people. They did say that if I got pregnant again, it would be high risk, and it would be bed rest after 4 months.


I now know that I have PCOS – I have no idea if that could have affected her at the time, but I’ve always felt overwhelmingly guilty. I don’t think I’d be able to deal with something that tragic ever again.


From that point on, I knew I didn’t want to have any more children. Me & fi have discussed the possibilities and have agreed that we don’t want to go through that, so our options are adoption or surrogate. Either of which are fine. There is no doubt in my mind that I could love a non-biological child as much as my own. There is also no possibilities that i’d be able to live through losing another child.


I guess you just need to weigh your options sometimes.


Post # 5
2122 posts
Buzzing bee
  • Wedding: June 2014 - DD born 2015 DS born 2017

@jenilynevette:  Your story made me cry. I’m so sorry for your loss.

This is a really difficult topic, and interestingly my coworker and I were discussing it just yesterday since she is pregnant and has scheduled the test where they check for chromosonal abnormalities.

Personally, if I knew the genetic risk was that of cancer, I would still have children considering the scientific progress that will be made in the next 30+ years and the fact that knowing family history will help the child spot symptoms early and in many cancers early intervension can mean the cancer would be cured.

In the case of EDS it is a life-long condition sadly with no cure, and although there are many forms of various severities, I just don’t think I could chance it in your shoes. That’s just my opinion though and I personally wouldn’t judge you whatever choice you made. I can’t speak for what other people or your own child would say however.

@MelodicCallie:  “I just think I would feel so guilty if we did have biological kids and they ended up with EDS. I know what it’s like to go through this everyday with the pain, meds, dislocations, disability. I personally, don’t know how I could handle seeing my kid go through the same thing if I had them while knowing the odds of them developing it.” I think that this coupled with both of your openness to adoption means you have your answer.




Post # 6
1218 posts
Bumble bee
  • Wedding: July 2013

I know this is probably not considered to be as serious as a physical disability, but my Fiance and I both have mental illness, so we’ve had this discussion.

Both of our families have a strong history of mental illness. Fiance has been diagnosed with one and I’ve been diagnosed with three separate mental illnesses. While we’re not guaranteed to have a child with mental illness, the chances are way higher considering both of our histories. Both of us have mental illness to the degree that is considered disabling. Personally, I do worry about the chances of us having a child with severe anxiety or depression. I know what it’s like to be suicidally depressed and I wouldn’t wish it on anybody, so I feel very guilty that if we have kids, we’re potentially setting them up to experience that throughout their life. However, my FI’s perspective is that our children will have a better chance of living a normal life than we’ve had, because we know the signs of anxiety and depression and would be committed to getting help for them (both of our parents’ approach was ‘ignore it’).

Post # 7
404 posts
Helper bee

Can I ask, and please please stop me if this is to personal. Do you have EDS due to genetic resons? I don’t know a whole lot about it… If you do, do you wish your parents hadn’t had you? I think that would be what my decision would be based on.

I do have a chronic illness, and although I’m pretty sure it’s not genetic, I would sill have kids, as I’m so glad to be alive inspite of it.


@littlebeanpole:  That would also be a concern of mine, (not that I’m thinking about kids any time soon at all) as theres a lot of mental illness in my family. I’ve come to find that people with mental illness seem to be some of the most caring and understanding people out there, and as long as you’re in the right place yourself, I think you could be wonderful parents.


@jenilynevette:  That’s so sad, you poor poor thing. =(

Post # 8
4495 posts
Honey bee
  • Wedding: October 2013

I have a congenitive disease – Osteogenesis Imperfecta (OI). My father had it due to a spontaneous gene mutation and there was a 50% chance that his children would inherit it. I am my parents’ only child and I did inherit OI. Now my children will have a 50% chance of also having it. It is a life long disease with no cure. Some types are deadly, but mine is not. Basically people with OI are called ‘children of glass.’ We have brittle bones due a collegen deficiency. With my type my bones actually got stronger during adolescence, so I have not had any fractures since I was 13, but prior to that I suffered around 30 (this is a VERY low number. I know a girl with the same type of OI as mine and she has had 150 fractures).

Since I have the most mild type, that is the type my children would have as well if they were to get the gene. I have thought about this SO much and it is a really hard decision to make. Its a painful disease to deal with because breaking a femur is not fun. But also it means that my children could never play sports or run around with their friends. Everything is scary. A wet floor sign gives you anxiety and if theres snow/ice you are terrified to go outside. Because with Type 1 we look ‘normal’ people don’t know to be careful around us, so we just have to opt out of certain activities – anywhere where there are crowds, rowdy people, etc. Honestly even though my brittleness has subsided (I don’t have to worry too much about it until I get older) the anxiety never goes away because in my mind I equate falling with breaking.

My Fiance and I have a couple of options. We can take our chances. Even if the baby does have OI there are constantly advances in medicine and maybe one day there could be a cure, but maybe not. We can just adopt, which we certainly aren’t opposed to. And lastly, we can opt to do embryo selection and in vitro fertilization. If we go with the embryo selection only my eggs that don’t contain the OI gene would be implanted. Unless there is a spontaneous mutation (very rare) it would ensure that our child would not have OI. I know there is a lot of disagreement regarding this process, mainly due to the question of how ethical it is to pick and choose which genes someone will inherit. Some people think its going against evolution and natural selection. Honestly I don’t think there is anything wrong with it. If you are able to save your child from a medical issue that would cause them to have a harder life, then why not? I think its easy for an outsider to say its wrong, but if they had lived with a condition themselves and knew they could prevent their children from suffering from it I don’t think they’d be so quick to judge.

For us we are unsure which route we will go, mainly due to how much the embryo selection/in vitro will cost. We don’t know if our insurance will pay for any of it, so that is a big factor for us. I have an appointment with a genetic counselor next month to get the ball rolling so we’ll just have to wait and see.

I’m not sure if the embryo selection would even be an option for you, but if not then personally I would probably adopt. I am not really familiar with your condition, so I can’t say for sure what I would do, but if its something with constant pain then I don’t know how fair it would be to have a child knowing they might have to suffer with that their entire life. For me, yes broken bones hurt, but its mainly the mental anxiety and stress that I want to save my children from even moreso than the pain.

Good luck to you!

Post # 10
10601 posts
Sugar Beekeeper
  • Wedding: January 2011

@MelodicCallie:  Do you know that your disease is caused by a dominant trait?  You might be worrying about the 50/50 for no reason.

I don’t have a condition that is purely genetic that I know of, but I do have conditions that have genetic components.  Darling Husband and I are leaning towards not having kids, and it’s a small contributing factor to that decision.

Post # 12
2073 posts
Buzzing bee
  • Wedding: July 2012

Darling Husband and I are talking about this a lot lately. We are both carriers for an anemia disorder. That can be tested for if we do IVF with preimplantation genetic diagnosis. Now, my other issues (Crohn’s, fibro, and another autoimmune disorder, depression) can’t be screened preimplantation. I would be ok using an egg donor, but my husband is very set on the child having DNA from each of us. 

While I hope my children do not struggle with my diseases, I am comforted by the fact that science is making leaps and bounds in both treatments and cures for them. I will do whatever I need to do to make sure my child gets the best medical care if needed.  Does it worry me immensely? Absolutely. My anxiety disorder makes it that much harder to think about, but we will do what we have to do.  

Post # 13
3718 posts
Sugar bee
  • Wedding: July 2013

@MelodicCallie:  I have celiac disease which is minor, but life altering. My view is that we will try and we accept the risks. I may have a tough time getting pregnant, I may miscarry, and we will raise our children as if they have celiac until proven otherwise (others may disagree, but I am very worried about the autism connection and I get sick off of toddler’s grimmy hands if they are covered with gluten.)

I think if you can accept and manage the risks, it is okay to try to have a child. I also think it is totally fine to say you don’t want to take the life altering risks and choose to adopt a child where the risks are more known. There is no right or wrong here.

Post # 14
89 posts
Worker bee
  • Wedding: August 2013

My Fiance has a 50% chance of having the gene for Huntington’s Disease, which is basically premature Alzheimer’s. He is going to get tested before we have kids. We will have the same issue you are having if he has the gene – average onset of the disease is in a person’s 40’s and lasts 15 years. If he had the disease and our child had it, I would be committing to spending 30 years of my life caring for my family as they slowly die.

The promising thing though is that I’ve been following the research, and they’ve been making advances. it’s possible in the coming decades that it can be treated through medication taken at onset and used for the remainder of life.

that said, we agreed that if he had the gene, that we would adopt and would not try to have a child biologically. However, if I were to become pregnant, then we would keep the baby, Huntington’s or not.

You mentioned God and working in a children’s minstry, so I’ll tell you this story. There is a popular grief course in churches called Grief Share. The couple who started that program had had a child with a rare recessive disease, Zellweger’s Syndrome. The baby died within a year. They vowed not to have more children. After a failed vasectomy, the wife was pregnant again. The second baby also ended up with Zellweger’s and died within a year. It’s probably the saddest story I’ve ever read, but it reminded me that God is in control ultimately of our fertility.

Post # 15
2743 posts
Sugar bee
  • Wedding: October 2014 - Disney

I have celiac disease. Where my marker is for this disease it is the high chance of causing the disease, and also causing other diseases such as thyroid disease(mother), diabetes type 1, and autoimmune arthritis (me). My daughter’s gastroenterologist is fairly certain due to the straight line in my family history and my numerous problems from the disorder that I have not 1 but 2 markers of the DQ 2.5 allele. I gave my daughter the marker we had her gene tested. I cried all night the night we found out. She has an 80% chance of getting the disorder due to the family history. Fiance and I have discussed that if I have two markers our kids will have a marker and an 80% chance to get celiac. Typically this marker only means a 20% chance but with my history its much higher. I’m extremely high risk for pregnancy and we have not decided if we are willing to take that risk, but we have agreed if we do we will test me to see if there are 2 markers as suspected. If there are we’ve agreed all of our children will be gluten free from birth, and we will allow them to make the decision to trial gluten when they are teenagers and old enough to understand the risks.

Post # 16
1218 posts
Bumble bee
  • Wedding: July 2013

@dewingedpixie:  My family also has a strong history of coeliac disease (my mum, two aunts and an uncle all have it). Chances are my sister and I will also develop it, but we’ve never eaten gluten free and have been fine so far. The good news is, a lot of restaurants and supermarkets are becoming much more accommodating of people with coeliac disease and there are a lot more options available these days!

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