Special Needs

Anyone scared to have another baby?

I am. On one hand, I want another baby because I have so much love in my heart to include another. I also want a second chance, if that makes sense. I feel like I was robbed of the "perfect" pregnancy and "perfect" child beginning at 18 weeks of pregnancy when we first got our bad news about DD. I feel horrible saying this but I want a chance to look at my newborn and bask in the glory of her or his perfect health. I want to be able to go to a doctor's appointment and not have an "issue". I want to be able to joke with my DH about when our DC learns to drive a car, goes to college and starts dating and know that those dreams will actually be a reality. And then I feel really horrible saying this- but I want another DC because I worry about who will take care of DD when my DH and I are gone. But I am so afraid of having another SNC. I feel like pregnancy is such a crapshoot. I could do everything right (and I did with DD) and still end up having a SNC. At this point our only options are using an egg donor, sperm donor or adopting. And then if I do get pregnant, will I even be able to enjoy the pregnancy or will I be constantly worried? I don't know. DD is 6 months old today and while we probably won't have another DC for 2-3 years I find myself thinking about it constantly- like I already need to have a plan in place. Though I've learned from experience that all the planning in the world doesn't necessarily mean a positive outcome. So why can't I let this go?
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Re: Anyone scared to have another baby?

  • I was convinced I wasn't going to have any more after Jack's whole ordeal (in bio).

    We discovered that his issues were caused by an autosomal dominant gene defect he inherited from me - so future children have a 50/50 shot of having the same problems.  Those aren't odds I like.

    However, a few years ago we learned that it might be possible to do an IVF cycle with PGD (preimplantation diagnosis) where they are able to screen our embryos for the specific defect and then only put back ones without it.

    So, we did a lot of research and talked to a lot of doctors (cardiologists, geneticists, fertility doctors, etc) and found a genetics lab that would work with us to do this - so - that's what we are doing right now.

    It's all very scary and very expensive and we've been working on this for a year.  And in the end we have no garantee that we'll have a child - and if we do we can be pretty sure the child won't have the same cardiac problems as Jack but it doesn't garantee that the child wouldn't have other problems....

    We found out about Jack's problems when I was about 6 months pregnant - he had a weird combination of issues that usually means an extrememly poor prognosis and we were told to prepare for the worst.  So, we talked a lot with a grief counselor during that time - she told us that couples who have special needs children or lose children very often go on to have another for the same reason you said - to have another chance at getting to do it the "normal" way.  It doesn't mean you love your little one less... you shouldn't feel bad about it at all.  I feel the same way... I would love to be able to have fun at a baby shower (my mom and I fought about having one with Jack - she said we should cancel because she thought he would die).  I would love to give birth and be able to celebrate with my family instead of lay alone in recovery having panic attacks while my baby is being transported to another hospital to have heart surgery... you know what I mean?  Plus I adore children and want more.... special needs or not.

    Sorry for the novel.... my point is - this is a really tough decision and all of us have probably thought through and felt the same things as you....

    Side note:

    There are other types of PGD besides the singe gene defect type that we are doing - they can also do a different type where they can look at multiple chromosomes to screen out lots of other issues as well.  Over the past year I've by default become well versed in all things PGD so if anyone ever wants to ask any questions about it feel free to page me here or over on the TTTC board.


  • Thanks for the response Hannah. I am so glad that you are able to do PGD. You know as a fertility nurse, I have seen a lot of fortunate outcomes by couples being able to do PGD. Unfortunately, in our case, PGD is not an option. Marley's syndrome is autosomal recessive, which as you may know, means she got a mutated gene passed down by me and my husband- we are both carriers. But the mutated gene has not been identified because it is such a rare syndrome- only 35 cases exist worldwide. So without knowing where the gene is located, we can't do PGD. And it breaks my heart. I guess it's a good thing I work at a fertility clinic, because the doctors I work for are very interested in finding the mutated gene. I'm curious as to which facility will be doing the PGD for you? We send our embryos to Mark Hughes.
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    I am scared too and keep thinking about it. My dh and I both are carriers of cystic fibrosis and my son ended up getting the gene from each of us so he has it. We are very lucky that it is a mild case and he would have been undiagnosed (he has no symptoms so far) except the state we live in screens for it in the newborn screening. Our option is like what Hannah described with the IVF screening to make sure the embryo doesn't end up with the CF gene. On top of that he has a cleft lip and palate and we have no idea of knowing if it was a fluke or if it is genetic. On one hand we would know what our challenges are if we had another baby with the same medical problems but I am not sure I want to go through that all over again and my ds already has a good amount of regular visits with various specialists that is now a part of our life and I just don't think I can handle anymore.

    Since the feeling of not wanting another one just gets stronger and stronger I started to get rid of baby stuff and it hasn't bothered me to part with it.
  • Hi there -

    We are working with the molecular genetics team at ReproGenetics in Livingston New Jersey - partly because they have a long standing relationship with our RE and also because they were willing to work with us :) We did a few other "consultations" and weren't met with much enthusiasm....

     It took them a really long time to develop our probes (about 6 months all together) which made me nervous but I feel confident between the direct testing and the linked markers they'll be able to identify the mutation with high accuracy.

    I do know that my RE does some PGD cases with Genesis and also some with Genzyme but in this case the best match for us was ReproGenetics.  I have heard fantastic things about Mark Hughes - he is after all Mr. PGD :)

  • I am. I'm fearful that my son's medical issues and intensive early intervention schedule will not allow me the time I need to spend with another child. I think every parent fears not having enough quality time for a second child, but with a special needs child, it's a bit heightened. I would hate the day that I have to say, "Child #2, I can't go to your soccer game because your brother has another doctor's appointment". I do hear that children with a special needs sibiling are better adjusted and more compasionate towards those with special needs.

    Of course, since we have no idea what causes my son's vision impairment, seizures or heart problem, there is always the chance that we have another child with the same, or worse issues.

    Originally I wanted to start trying to get pregnant again when my first was 18 months old because ultimately we'd love to have three children. Now I'm not so sure.

  • Ama,

    My DS's SN was a birth injury and dear god, the guilt and blaming of myself was so bad that I looked into elective c-section even though I had decent vaginal deliveries.  My DS's shoulder dystocia was a bi product of his size, and I did not want to be induced because I was two weeks late.

    It was awful and thinking about getting pg makes me wonder how I could screw up another time...
  • I am afraid too, and I can echo so many of the fears that the PPs have stated.  

    I still feel incredibly guilty over DD?s condition (Turner?s Syndrome), even though the doctors have told me numerous times that it wasn?t our (DH and me) fault.  DD is doing well right now and I keep telling myself to just appreciate and enjoy it, but sometimes I feel overcome with guilt for her, and fear for the next DC.   I want to give DD a sibling, but I am scared of what could go wrong. 

    Because we have SNCs, we are hyper aware of the risks and complications, and so this feeling is probably normal, but it still sucks!  I wish I knew how to shake it too, especially now that we have started TTC for DC #2.  I?m trying to think positively and have faith that DC# 2 will be healthy. 

    Despite the uncertainties/unknowns, one thing that I know for certain is that DC #2 will get tons of love from his or her big sister.  DD has been asking for a brother AND sister lately, it?s really cute.    =)

  • I absolutely was.  We found out at 19 weeks about Jake's hydrocephalus and after that it was ultrasounds, stress tests and appointments almost every week.  Meeting with neurosurgeons to discuss our options about surgery on our child that we hadn't even meet yet was very difficult.  However,  since Jake was born, all the time he has spent in the hospital and all the time that I have spent in the doctors offices with him I have accepted that God gave my husband and I Jake because he wanted us to have him.  He wanted us to love and take care of him, for whatever reason.  I'm ready to have another one, Jake is 6 months and I want to start trying for another one the beginning of the summer next year.  My husband is on the fence.  We didn't have any genetic testing done so we don't know what our odds are.  I told DH that if he was worried we would have the testing done.

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