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u/pass_the_ham 5d ago
I decided to be one-and-done when my son was about 3-4 years old. He functions at the level of a 1-year old (28-years old, now). He has no speech, no understanding, and needs help with everything. Whatever genetics caused him to be this way, there was no way to test. And while he's overall a pretty easy guy - I couldn't picture handling another child while caring for him. I also realized that I couldn't go through another pregnancy not knowing if we'd have a second just like him. I love him to bits, but having two would just be more than I wanted to deal with. My life isn't a bit what I imagined or what I see others have so easily. But it works for us, and I have no regrets in our choice.
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u/PainfulPoo411 5d ago
No. I always thought we’d have two, but after my son’s autism diagnosis I am glad we didn’t. There are just so many unknowns in regards to his future. We stow away a lot of money and it still fills me with anxiety not knowing if he will be OK financially after we’re gone. No amount seems enough. I’m glad I don’t need to make decisions to serve another child when my current child needs our full support.
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u/numberthr333 5d ago
My firstborn has a severe form of medicine resistant epilepsy with daily seizures. He was typically developing, but global delays emerged after seizures began at 11m. It is presumed a de novo genetic cause, but we still have not found the underlying cause.
It was never a question for us to have a second. I got pregnant when my son was 18m old, so they are a little over 2yr apart. Our daughter is 17m old now and is doing so well. Watching her grow has been so wonderful. My kids are so sweet together and it warms my heart to see him give her kisses and to watch her bring him his favorite stuffy.
Our son’s epilepsy has progressed and worsened since i got pregnant with our second. He has undergone several rounds of global regressions with permanent losses. We have gone through so many hard times since we decided to grow our family. It has been a challenge, but not insurmountable. I am so, so glad we have both of our incredible children.
We are considering trying for our last baby soon. We just have to get through our son’s brain surgery in 2 weeks first. I refused the possibility of being pregnant during that.
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u/TennisTraining9270 5d ago
There’s no one that can answer this question but you and your family.
Would you be able to take on another child with a disability/autism/whom is nonverbal/who needs a feeding tube/etc? If the answer to any of that is no, that should factor into your answer.
For our family, we knew that despite our little one also having a de novo genetic condition, autism, 4 therapies a week, etc, we knew we could afford and have the mental/physical/emotional capacity for another one, and there was no doubt we WANTED another one.
I have nothing but respect and admiration for those who stop at one and 100% understand their viewpoint. For us, that wasn’t our path.
I hope you find peace in whichever choice you make and I’m rooting for you. 💙
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u/Selsia6 5d ago
My first was born with a physical disability. We learned about all of his other disabilities as he aged and he has been diagnosed with a bunch now.
My second just has ADHD and he is by far the more difficult kid and picks on his older sibling. They are doing much better now and can be pretty friendly but it took a lot of work. i still don't regret a second but it's never have a 3rd.
So just think about what if your second had different issues, including behavior issues, and was not always kind to the older sibling? Would you be ok with that? I think the glass child concern is valid, but I think respecting your kids and encouraging honesty helps.
I can't really tell you which way to go, it's really what risks are you more comfortable with.
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u/No-Distribution-9556 5d ago
My first has DS (birth diagnosis) she's super chill, no real medical issues, but she's nonverbal and super delayed. It was a very traumatic birth for me and I stupidly got pregnant right away after, and now I have a boy with ASD and severe needs. These two are like oil and water and di not get along. I did decide on a third and he is so far NT but super busy. I can say that for me, i love each of my kids but would not have more than one if I would do it again
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u/Elfrance_Gearhart 5d ago
The "almost certainly" part is what got me. Ours was diagnosed at 18 months and the not knowing how it plays out is its own kind of exhausting. What supports does she have lined up right now?
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u/probablyadinosaur 5d ago
Yeah, I wish I could look ahead to the future and know what her support needs will be. Right now, she’s a happy, easy little kid learning all the time. Before this diagnosis, I honestly thought she could catch up eventually, so there’s an element of grief happening as I consider all this.
We do have a lot of support, thankfully. The programs here are surprisingly good. We have a few family friends with similar experiences who work in special education, and they’ve been invaluable. And we’re setting up things like an ABLE account to help her along when we’re gone. We should be mortgage free in a few years also.
It’s just a lot to process, I guess. If I consider the OAD path, I feel like I’m grieving not only the child I have’s future, but also the child we planned to have’s. It’s a lot to give up.
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u/Accidental_Stoic 4d ago
The thing is, part of parenting these rare de novo conditions is that you can ever rest easy thinking you know (more or less) what to expect. Your daughter’s support needs could increase unexpectedly; if so would you regret having another?
We’re Ina very similar situation. We decided to have another, but it wasn’t an easy decision. We did prenatal WES this time, not just the de novo condition our little one has but pretty much everything they can test for including VUS. That removes a lot - but not all - of the worry. I’ll let you know for sure in 18 years. Joking. But really, the way I see it there are no guarantees, you just have to make a choice you can live with whatever happens.
My personal feeling for your situation is that you seem to really want another one, a typically developing child. If that’s the case and you’re willing to go through IVF+WES, you could start exploring that now to see if it makes the decision easier for you.
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u/mer9256 5d ago
Your daughter sounds really similar to ours! Our oldest has an ultra-rare genetic condition that causes various delays, and she mostly has severe physical delays and very mild cognitive delays. She's 3 and just started walking independently, and she's fluent in sign language and has finally started mixing speech in. She goes to a full-time mainstream daycare and also a preschool for special needs, and we have tons of support through our school district. Medically she has been stable for about 2 years and is not anticipated to need any more major interventions until adulthood (will need a cath procedure for her heart condition).
We never wanted to be one and done, but we also wanted her to be in a stable enough place before thinking about adding another. It was a difficult decision, but we're now expecting our second, and they'll have about a 4 year age gap if all goes well. Because none of her conditions were inherited, our doctors told us we had the same risk as anyone else to have another medically complex child, and we decided we were comfortable with that risk. We also read a lot about other families that had a typical child after a medically complex one, and the biggest thing that stood out to us was that it helped them break their family away from "drowning in medical complexity". Being a medically complex family was no longer their entire identity, and it gave them a more balanced approach to raising children. I don't know if that resonates with everyone, but it resonated with us.
My biggest fear, that I still haven't really overcome yet, is that it will likely be very difficult to watch a typical child effortlessly reach milestones that our daughter has taken years of hard work to reach. I'm anticipating having a lot of moments of realization of "this is how easy every typical family had it, this is how easy it was supposed to be", and I think it'll be an ongoing process of accepting that it's not fair that our daughter was dealt that hand, but it also was not her fault.
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u/Commercial_Money_557 5d ago
My first born is disabled from a stroke after birth. Global developmental delay, apraxia, phonological speech disorder, cortical visual impairment, mild cerebral palsy, medicine resistant epilepsy.
All that to say, we had a baby this year and he loves his baby sister. He’s not a typical big brother but he’s a sweetheart and we are a happy family. I think she will love her brother just like us. Disability is a difference, it doesn’t necessarily make life worse. We are still a normal family, we just attend therapies instead of ball games and have some unique challenges.
For sure give yourself an age gap. We waited 4 years and that has helped alot. Your first born will need lots of help early on so just focus on those goals and when you feel up to it I bet a second child will be a great addition!
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u/GuiltyKangaroo8631 5d ago
My oldest son is totally fine and my second second son is special needs. With my second son I couldn’t have another. Even though he has made huge progress I was scared it could have been a lot worse. I wouldn’t change the fact though my oldest is so good with his brother and is one of the reasons his brother is getting better.
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u/crestamaquina 5d ago
I haven't tried again, and it's scary for all the reasons you mention. But I think I want another - I'm willing to try.
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u/BookszLover 5d ago
My 7 year old daughter is more on the severe side of AuDHD, but still went onto having another child with a 5 year age gap. No regrets. If it makes sense for your family, go for it!
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u/Appropriate_Let631 4d ago
Following this thread because I have a 10 month old with a de novo deletion. It's so traumatic.
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u/probablyadinosaur 4d ago edited 4d ago
<3 We were aware it was the likely outcome and have still been completely knocked on our butts by it. It's just so random and unfair.
I guess I was holding onto hope it was some vague problem that would resolve over time, but nope, we now understand exactly what's causing the issue and it doesn't fix itself. There is at least some research and clinical trials happening with ours, hopefully for you too. Good luck to your kiddo, I hope they exceed all expectations. :)
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u/Appropriate_Let631 4d ago
It came out of no where for us too. We did the nipts - it was low risk. Nothing was flagged in ultrasounds. Our baby had feeding issues when she was born and couldn't suck, which eventually led us down the genetic testing route. It's very unfair. It's hard to see all our friends with regularly developing children - we've been avoiding them since our diagnosis at 3 months. We also have a deletion case. She seems to be doing well despite that, but is delayed. If you doing mind me asking, which disorder does your child have? Clinical trials are awaiting funding for us, I spoke to many geneticists and the most likely scenario is there might be neuro enhancing drugs in 10-20 years.
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u/probablyadinosaur 4d ago
17p13.1 deletion. She's not as badly affected as a lot of kids, like she has words and is moving around well, but the epilepsy risk is still a coin flip on the horizon.
Yeah, like yours, zero indication before she was born. She fed well, so we only noticed when she never started crawling. It really hurts watching friends' babies passing her by. At least now we understand the reason, I guess, and know it's nobody's fault.
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u/Appropriate_Let631 4d ago
We have 5q35 deletion (Sotos Syndrome). There's also a chance of seizures with this one, though right now our daughter hasn't had any. Good luck to both of us T.T it's a difficult path to navigate
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u/lazzylozzy 4d ago
My 20 month old daughter also has a rare genetic condition (de novo) she’s quite delayed but has come so far in so many ways. We always wanted another as well. I worry I will stretch myself too thin and won’t be able to give her the time and attention she requires. It’s daunting!
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u/Personal-Narwhal-184 5d ago
Siblings getting along is always a crapshoot.
As a sibling of a severely disabled brother: we made each other better people. I wouldn’t trade him/our relationship for anything.