Thursday, January 7, 2010

Were you scared of going for kid no. 2 after having one with special needs?

I've been e-mailing with a new reader to the blog, Janet, mom to an adorable 18-month-old boy who, like Max, had a stroke at birth. She asked the following, and said it would be OK if I answered her here so everyone could weigh in and share their experiences:

"Did you have anxiety about having another child? Or did you know it is what you wanted for your family? I think my son would be an awesome big brother. I did see a high risk pregnancy doc, they say what happened was a fluke and they don't feel my next pregnancy would be high risk. But the whole hospital experience etc. has me very scared."

I know how she feels—I had some anxiety about having a second kid. But my yearning to have another child overcame any concerns. I've always loved kids and definitely wanted at least two. I also wanted Max to have a sibling who would help him in life. And, less significantly but still important to me, I wanted to have a "normal" new-mom experience after what I'd been through with Max (that's Sabrina at five days old, above).

I didn't see a second pregnancy as much of a gamble. Max had a bilateral stroke, a relatively rare thing. It was caused by a lack of oxygen sometime during his birth—a human error, it was later determined. Max did have a contributing factor, two blood mutations that make him more prone to clotting. But those alone cannot cause a stroke, there has to be a trigger (in his case, the lack of oxygen). I went to a high-risk practice and felt secure in the doctors' hands. They put me on blood thinner, as a precaution. And I got lots and lots of ultrasounds.

Dave and I aren't superstitious types, but we decided to do things differently the second time around. So we found out the sex of the baby. The first ultrasound technician told me it was a boy—I'm still not sure what she saw on that screen. At the next ultrasound, I told the technician I was psyched to have another boy and after a few minutes she said, "Well, I'm pretty sure you're having a girl." When I called Dave from the appointment and said, "Guess what?" he answered, "IT'S TWINS!!!"

The only trauma I had during the pregnancy came in the form of the idiot neurologist who did a scan in my eighth month; we wanted to make absolutely sure Sabrina's brain was fine.

He obviously hadn't fully read my chart because as he glided the ultrasound wand over my belly, he said, "So, your first child had a stroke?"

"Yes," I said.

"What did the autopsy reveal?" he asked.

I burst into tears. The nurse, who knew me, gently said, "Her baby did not die."

I couldn't stop sobbing for five minutes. It was absolutely, excruciatingly horrible. Idiot Doctor felt bad and jokingly said I could punch him, which I briefly considered. After he left, the nurse took 3-D photos of Sabrina to console me.

Definitely Sabrina, with a very smooshed nose. Actually, she looked like she was itching to tell that doctor off.

So, Janet, what I say to you is go for another child (and no worries about Idiot Doctor, he's not in your area). It was very special to experience new momhood with Sabrina, I savored every moment. Having a sister has helped Max thrive (even when Sabrina's torturing him, she's at least teaching him to stick up for himself and inspiring him to open up his tight right hand to pull her hair). Having one typically-developing child and one with disabilities has made me a more balanced mom—I might still be one big ball of worry if I only had Max to focus on. Each of them made me appreciate the other that much more.

And, of course, the only thing better than one delicious kid is two delicious kids.

How about you—do you have concerns about having a second child? Or were you worried before you forged ahead?


  1. In our case, Connor has a genetic condition in addition to having had a stroke. A genetic condition that Jeremy is a carrier for. We have a fifty percent chance of having another child with Connor's condition or it's genetic opposite.

    We decided not to have any more biological children. While we love Connor and if I got pregnant again (very unlikely as we've taken some permanant precautions there) we wouldn't terminate the pregnancy if we found out the baby was affected, I had four miscarriages before the docs gave us a diagnosis, and we don't feel like we can lose any more kids, especially since the one we currently have what is considered a "life limiting" condition.

    It's not the conclusion everyone in our shoes has come to, and in my opinion there's no right answer, but that's what we decided. So we're adopting-- probably another child with special needs, though not one with the seriousness of Connor's condition. We'll just have to see!


  2. I guess my mom got lucky having twins, but she always wanted her third child. Having two children with significant medical issues directly impacted her decision, but it wasn't solely because I have cerebral palsy, which is a great source of comfort to me. :)

  3. I think we can be considered lucky that my one boy who had a strke at birth is half of a set of twins. It was a high risk pregnancy, but since his twin brother is completely fine, we never had any worries about going for a third biological child. Unfortunately we haven't been able to get pregnant.

  4. I am relieved to see this post. I have quite a few friends asking me these kind of questions, the new year seems to bring that kind of big issue into focus. If I am honest though I just don't know what I would do. We had our third child before my son was diagnosed with autsim and I am relieved we had her already and I didn't have to make a big decision like that. I blogged about it, just yesterday as it happens, but there is no easy answer for me because I don't have to make the decision. I am finding it difficult to assist my friends, all I can do, like you do, is say that I am delighted we have all our children and wouldn't change that. No regrets at all! Jen

  5. I had 2 children after having my son that had a stroke. I can say that after we made our second trip to the NICU with our second child (totally seperate issue, not related to a stroke) we decided we were done. I ended up with severe post partum depression, I think from the trauma of both births. I accidentally got pregnant a third time, and although we were upset about the pregnancy, my daughter has been the most incredible thing we have ever experienced. I had a healthy pregnancy with Victoria, along with a wonderful and healing birth. I can't even describe how I felt when I had her, I got to hold her, nurser her, cuddle her, kiss her, smell her...oh the list could go on. I know having more children isn't the answer for everyone, but it was for us. She has healed us from what we went through with our first two. Not that we have forgotten those births, but we don't look back with regret anymore. We don't constantly ask ourselves "What if..."

  6. My son's severe form of epilepsy began when I was already 7 months pregnant with twins. I still considered another child until one of the twins was diagnosed on the autism spectrum. Two kids with needs and services was enough. BUT, I can't imagine not having the twins to balance out all we have been through with our oldest.

  7. Well my case is very weird, and doesn't really "fit" anywhere. Noah is 2 and does not have any special needs to date( which in itself is a huge miracle given the statistics we were told!) but was born with a brain injury, a very swollen brain to be exact, and had seizures. We don't know what the hell happened, at this point it was probably some sort of lack of oxygen during the days or day of labor and delivery. I will never, ever know and part of me is driven crazy by this almost daily.
    I always wonder if we have some horrible genetic issue we passed to Noah that will rear it's ugly head, waiting for the other shoe to drop is equally as scary!
    I am now 20 weeks pregnant with baby boy number 2- it's a gamble since we don't know what happened but as Noah gets older and he is still "ok" I try to rest easy that it was "just" oxygen deprivation and that this will NOT happen again. I am not saying it's not scary, because it is. Some days I am panic stricken all day long. I am trying to be calm and look forward to holding my healthy baby boy in May, no NICU time and moving forward as a family.

  8. Alright, here is my answer. You might be sorry you asked.

  9. I would like to thank everyone for their thoughful responces. It gives me a little better understanding.

    As a single mom, I built my family through adoption. My oldest, now 11, was diagnosed with CAH after adoption (though it should have been before, but a long story). My second was added after after I learned that I COULD deal with kid medical issues. She is my completely healthy, middle child who often feels lost. After much, much prayer, I adopted my son. He was 27-months at the time of adoption and had a complete bilateral cleft lip and complete bilateral cleft palate. His autism and lack of speech/language were unknown - fortunately because I didn't have to make a decision. Even though I would love to have another child, I won't because it wouldn't be fair to that child or my 3. Having 3 children makes for a busy life. But the autism can make it crazy at times. If Luke was my first, I don't know what my choice would have been.

  10. With our the time I was scared and concerned during the pregnancy, but not necessarily about having another child. Kennedy had seen specialists and her condition didnt seem to be progressive, so we didnt think it was genetic. Although we were already pregnant with Zach while she was seeing the geneticist.

    My main concern was when we did the ultrasound...I just wanted to know how the amniotic fluid was as Kennedy was induced due to barely any amniotic fluid. He was fine.

    Now after some years have gone by...there are many times I long for another(a third)child, but am even more nervous now. 2 years ago Kennedy's condition really took a turn for the worse and there is the possibility that it could be a genetic mutation or not...the tests have not pinpointed anything. Zach also was diagnosed as autistic about a year before that. So it is tough.

    If Kennedy was the same as she was 3 years ago, despite having a disability and despite Zach having autism I would probably go for another child. With Kennedy going through so much the last couple years I think so differently.

  11. I suppose my case is a bit backwards because my special needs kid is kid #2. I have to agree with Ellen. It has been the "typical" sibling that has pushed the special needs sibling to do all she does and to accomplish what she can. They have a bond that is undescribable. I sometimes want a third but because Anna's special needs were caused by complications from my preeclampsia I will likely not have another as I have been told I will get it again and it will likely be worse. Anyway, I say go for it!

  12. Hi -- good topic. I got pregnant again when my son with a rare genetic condition was about 18 months old. We knew we wanted more kids and had always envisioned a larger family. I was terrified. Although we were told the chances of having a child with the same random genetic change (we aren't carriers) was less than 1 per cent, I didn't hold faith in stats any more. We feel very lucky that our daughter was born healthy and it was amazing to have the typical experience of birthing a child and being able to celebrate -- without all of the shock, anxiety and grief that heralded our son's birth. I didn't want to feel that we weren't pursuing our same dreams because of my son's disability. Each person's situation is different. Let us know what you decide!

  13. After talking to a geneticist who determined that Evan's heart defect was not part of a syndrome and that it was a random event we felt free to have more kids. I know that I got pregnant with Harry so soon after Evan because I wanted to have the "normal" baby experience just like you did. Harry did end up spending a few days in the NICU because of breathing issues due to him being a c-section baby which brought up a lot of flashbacks to Evan. Luckily he was fine and just needed some extra oxygen for a few days while his body got rid of the extra fluid in his lungs but it was still traumatic. I was thrilled when we avoided the NICU when Daniel was born, I was beginning to feel like there was some sort of baby bad luck following me around.

  14. With me, after Faith was born, I was like NEVER again! Then as she got older, I felt like I had missed out and wanted to see what regular parents had. I was terrified that it would happen again, no one can predict even if it is rare. But things were never at the right time and we waited, let things calm down. Then those urges and emotional responses started to go away, as she got older and we became settled with our lives. Now that she is 6, we feel like we made the right decision. It was a feeling of unfairness, but time took the sting out of that and I can't imagine splitting my time with her and another child. I have heard other conversations about this topic and my experience is if you are unsure....wait a little...your feelings may change or they may be made more sure.

  15. Thanks Ellen for posting my question and thanks to everyone who commented. When I sit back and think about my family I definitely see more children. I just wish I could get the worry under control.

    Will I have enough time and energy to devote to both children? I know in my heart the answer is yes. My heart grew tremendously when I had my son and I know there is plenty more room in there.

    Can my heart handle another NICU stay? Of course. It would be rough, but I feel like I can handle anything now.

    I could go on but I think its time to stop worrying and start living and getting busy! ;) Wish us luck.

    OH and I swear....if I get an idiot doctor I just may swat him. grrrrr I groaned out loud when I read that. (gol???)

    Thanks again, Ellen. You rock!

  16. Such a timely post for me. We are in discussion of #2 right now. We always wanted more than 1 child but the thought of adding more stress to our life is what is holding me back. My son will be 3 at the end of May. He has CP due to an apnea event at 24 hrs old while nursing - i thought he was alsleep. So while I had a normal healthy pregnancy i will always wonder if something happened in utero to cause this. he was in the NICU for a month. i'm pretty much scared to death to go through it all again. .. but Miles is the joy of my life & he would so love & benefit from having a sib.

  17. Hi Ellen what a great post! After having the twins, Preston passing and Jonathan having moderate CP inwhich he still 2yrs old has no head control cant sit or crawl,and a g tube I do have to admit he is the happiest cutess kiddo I know! So we knew we wanted more kids but I was scared the whole pregnancy the what if scared me getting to the 24 week mark I was a mess, Leah was growing fine everthing looked great and eventhough she came 5 weeks early she was perfect with NO nicu time she was 5lbs 5ozs and she had to be taken at 35 weeks due to my gestation diabetes and we are so glad the dr. took her early she had the umbilical cord around her neck 3 times and the dr. said she probably would have been a still birth if we waited any longer so eventhough we wanted this huge family we will be happy with our 2 children and Preston that is waiting for us to join him!

  18. I also wanted to add to Janets question, you will be scared and nervous that is what moms do but I have to admit when we got pregnant with the boys I was seeing a regular o.b. When I got pregnant this time I went to a high risk dr. and they seen me every week and I got a cerclage at 16 weeks and started p17 (progestrone) shots weekly then at 30 weeks they started seeing me twice a week doing nst's and checking fluid level to say they monitored me is an understatement.

  19. You know, I didn't have any concerns about having a second child because I didn't want my first to be an only child to me. Come to think of it, I was pretty fearless about this.

    Now, I can see that having any child is a big risk, even after they are born and growing up. Parenting is a huge responsibility.

    p.s. Congrats on your article!!!

  20. What a powerful post and so in my mind right now. We have officially jumped the hurtle and are trying.

    I am super nervous but I have seen all the high risk doctors and have had Sean tested for every test.

    Patrick and I got tested to and we are all in the clear but some reason I am still scared and nervous but not as much as before. I just needed time to digest and process and no matter what Sean is perfect for us and god only gives you what you can handle.

  21. This has very much been on my mind lately. I am terrified to have another. I got married later in life, at 38, and had my son when I was 39. It was a very healthy pregnancy, and everything was going so well. I was looking forward to so much in life. But it all went wrong at the time of delivery. My baby was dead on delivery - they got his heart beating after 6 minutes. My husband and I were temporarily living in Australia, half way around the world from our families, and had to deal with it all on our own. Last Feb. we moved back to the US to be close to my family. But at the age of 28 months my son still cannot roll over, eat, drink, talk, or us his arms/hands to do anything more than the most clunkiest movements. He vomits several times a day, and suffers so much. I know his CP is a result of a traumatic birth, and hospital error. But having a child like this makes me so much more aware of all the different things that can go wrong, so many of which are completely out of our control. I always wanted at least two children, and I still do. But I am terrified I simply cannot handle it. I am an excellent actress, as it turns out, and most people think I am managing very well. But I am still grieving intensely. Life is hard, and every day, hour and minute is a struggle. Everywhere I look I see things that I will never have, and it cuts just as deep now as it ever has. I felt young at 39, and happy with life. Now, after 2+ years of stress and no sleep, I am old, and tired. But there is part of my heart that wants another, healthy child. A sibling for my boy, a child who can tell me s/he loves me, will cuddle with me, and maybe mend at least part of my heart. But what if something goes wrong? And even if I was lucky enough to have a healthy child, how can I manage two when my first demands 100% attention, physical, mental and emotional? I am now 41, on my way to 42, and I do not have the luxury of time. I think we will try, as I feel I will regret it if I don't.

  22. I was already pregnant with JD when we got a full diagnosis on our T. We were worried, but I knew there would be no problems with him. and there aren't.
    and i am so grateful that we have him and of course T. Couldn't imagine not.
    I can still remember the doctor saying "on the autism spectrum, Sotos syndrome, significant delays" and my immediate thought was what about the baby in my belly? It is scary for people to have another one after having so many problems with the first. It's a gamble. But I think my second is a little guardian angel for my first. They will always have each other.
    Great post as usual. Great topic! one that i have thought about often.
    Kristen : )

  23. We've had two after my autistic son, but the first doesn't figure in here because when she was born my son was officially just "difficult". But with my baby, it was a major conversation. Autism may not have a specific chromosome that's easy to point to, but it does run in families. We had to decide if we could handle another autistic child if that's what we got. Because I do know families with multiple autistic children, in varying degrees. We finally decided to do it, and were blessed with a girl- autism rates in boys are 5 times higher than with girls. This is an extra big deal because it's not like we'd know at birth whether a kid has autism or not.

    I know a lot of people who've had kids after, some who have and several. I can say that in my experience, having siblings is best therapy for my son.

    Actually being pregnant, having and then raising said kid (which for me included my already-born toddler because autism could still pop up) is mega-nerve-wracking. But I get the blessing of really appreciating every single step they go through.

  24. My special needs child is #2...the trauma of my emergency c-section made me get an IUD at my 6 month post partum. I would really LOVE another child, I have always loved children. But, I know I can't bear the thought of what 'may' happen. My child with CP also had a stroke within utero, at some point before delivery...cause UNKNOWN. I'm only 32 years old, but I know if I'm going to have another, I need to make up my mind within the next year or two. Thanks for your post, it's definitely something on all of our minds!!!

  25. Oh Ellen, I so would have been in tears too at that doctor's comment. How awful!!

    Yes, I was scared but held on tight to a faith that lightning just wouldn't, couldn't, shouldn't strike twice (everyone agreed that S's brain injury was sustained and not of a genetic nature).

    And as we approach the impending birth of baby number 3 (any day now!) I honestly very rarely consider the 'what ifs' if something being wrong. I do know though that my disappointment at discovering we were having another boy (was really hoping for a girl) was definitely very much overridden by the relief of hearing that he was healthy at our early ultrasounds.

    Having faced that awful experience of my first born son coming so close to not surviving is not something that will ever leave me, but he loves his brother and his brother's birth and healthy, normal development has been wonderful for all of us to witness.

  26. I was fortunate to have twins, so I didn't have to make the decision of having another child after having one with a disability. My daughter has CP, mild, along with PKU and reflux. My son is perfectly "normal". He is her constant playmate, friend, rival, supporter, teaser, etc...Every day I'm thankful she has him in her life. We haven't had any other children, and probably won't. We had to do IVF just to get pregnant, and now I'm approaching 38 which is considered high risk for IVF. Even though I long to have a single, normal pregnancy. To hold my baby right after they are take them home from the hospital with spoil them rotten those first few months. There are no gaurantees with pregnancy. So instead, I'm just thankful for what I do have...
    However, if I hadn't had twins the first time around, I would accept all of the risks and try for that second baby.

  27. Wow, reading all the comments I forgot I had two kids to feed. Anyway, I'll keep this as short as possible. 1st I was even supposed to be able to have kids so both of mine were surprises. I had my son at 37. It was an easy pregnancy and difficult birth. My son has had so many diagnosis and misdiagnosis that we really didn't know what was going on until just recently. When I got pregnant with my daughter a friend (with great insight) at work suggested I use another doctor with her so thankfully I did. At 39 years old I was considered high risk and treated with great care which I should have received with my son.
    I had my tubes tied after my daughter. The agreement I had with my doctor was that as long as my daughter was alive it was okay to go ahead with the surgery. Sounds strange today. My son is 7 and my daughter 5. Having a second child balanced things out. I do feel bad for my daughter sometimes because she takes on more than she should at her age. Its almost instinctive the things she does for her brother. Go for it Janet.
    Ellen, Sabrina is so cute. I've had a few idiot doctors too. How did they get through medical school?

  28. Concerned? Worried?

    Naaah. The first was adopted from a terrible family (in laws) situation (there was no other choice, unless he was to be given to strangers), and the second was a happy accident!

    Fat, dumb and happy, I was!

    Still am...most days!

  29. I'm profoundly deaf, so my mom had to learn sign language, find school programs that could accommodate me, educate others on sign language and deafness, etc etc. I was her first child. My deafness is genetic, though nobody else in my family is deaf.

    However, she had a 2nd child 4 1/2 years later. She admitted it was a mistake but today, she's VERY happy she had my sister. My sister & I get along wonderfully & my sister knows sign fluently & knows no different.

    I think her not wanting another child wasn't because of my difference but because I was a difficult (read: stubborn) child! :P She adjusted to my deafness VERY well (although she WAS sad I couldn't appreciate music, her being a 20-something who harbored dreams of being in a band ;D)

    The risk was something like 1 in 4 my sister would be deaf, but honestly, I think with one deaf child she could've handled another. In Connor's Mom's case this would be a different story/conclusion. Deafness isn't a life-threatening condition.

  30. This topic certainly hits close to home. After delivering my took-five-years-to-conceive twins at 29 weeks, enduring a stressful NICU stay for both of them, learning my son had grade 3 PVL (two years later to be diagnosed as CP), surviving a winter of never leaving the house except for doctor's appointments, I was more than happy to be "done" with having children. After all, I had twins, a boy and a girl, whom I loved. My son was definitely delayed and getting therapy. I adjusted to my new family. And then, when the twins were 13 months, I learned that I was very unexpectedly pregnant. Since I had been told I could never conceive on my own, I had never really considered the possibility of having another. I was terrified. Petrified. My husband and I barely talked for weeks, as we slowly came to grips with the reality of another baby. Could I carry to term? Even though we were almost certain the twins' early birth was due to them being multiples, and Jonah's delays due to the early birth, I couldn't keep the fear at bay. I was stressed and anxious the entire pregnancy .... fast forward nine months ... I went into labor two hours before my scheduled C-section and delivered a beautiful, healthy boy ... exactly 21 months younger than the twins.

    Having Eliot has been such a gift ... not just because he somehow healed me (which, in a way, he did), but also because he completed our family. Would our family have been complete without him? Of course ... but now we just cannot imagine life without him. It saddens me to think that if it had been my choice, I never would have had a third child. Sometimes, unexpected surprises are actually blessings ...

    Good luck to all of you in your decisions ... whatever you decide, know it is right for you and your family.


  31. When I went in for my 8 week check up for this pregnancy, I saw a new dr. She asked me questions about my previous pregnancy...and I told her my first pregnancy my daughter had a stroke. She looked at me and said, "Oh I'm sorry, Did she die?"

    I was like NO, but I almost just did! I couldn't believe she asked me that. I said, "my daughter is a beautiful, functional 2 year old little girl! She does everything and anything she wants to do, yes it's been a long road and no the road is no where near over, but man is she AWESOME."

    This pregnancy has had me more on edge, but I've been trying to just remain calm and trust in God! It's all I can do right now! I'm not in control of so many things that I just have to leave it up to Him and pray that there is not a huge black cloud over my pregnancies!

  32. Wow, what a difficult topic. I had 3 pregnancies in my late teens early twenties. None were planned. I miscarried my first pregnancy at 8 weeks for unknown reasons. It still pains me sometimes to think of it. When I got pregnant again I was scared, but determined and I got through it ok and my son was born healthy. My third pregnancy with my daughter turned out to be the tough one. One of my blood tests came back that the baby had Trisomy 18 which I was told was "incompatable with life". They wanted to test the amniotic fluid to find out for sure. The wait for the results was the worst, but it came back that she had Turner's Syndrome. It's an uncommon genetic disorder that only affects girls. (Ruined my plan of not finding out the sex of the baby! lol) After she was born, which had no complications really, she saw a geneticist regularly. She has mosaic TS, so she is, so far, not even affected by it.

    Now in my early 30's I have longings to have another child, but then I think, mine are already half grown, do I really want to start over? I also think of the miscarriage and the TS in my daughter and worry that there may be other issues. Then recently I have begun to wornder in earnest if my son (at 13) has Asperger's Syndrome. I had suspected most of his early childhood that he had ADD/ADHD, but now that he's older it's just getting worse. I've never put him on medication, but I'm thinking I may need to now. I just have to figure out a way to get him tested.

    Basically, if I had the chance to get preganant again...I probably would. But then I haven't had as much difficulty as some others have. Everyone has to make their own choice.

  33. These responses are all incredibly moving; Janet, I hope you find them helpful. Amanda, I can't believe you had a similar experience with your doctor. There's bad bedside manner and then there's cold-hearted bedside manner.

  34. I am so thankful to read this post. We are currently contemplating #2 but it is just so very scary...I believe in 'signs' and this post was my 2nd sign of the day to go for it.

  35. The difference between you and meet- I would DEFINITELY have punched Idiot Doctor.
    The none of my business question of the day: If Maxs' loss of oxygen was related to MD. error have you sued. It could be a sore point but any monies received could always be earmarked for Max's use after mom and dad have traveled onward. It would help Sabrina with his care. Under Mass. state law it could be placed in a special needs trust so it would not affect his ability to receive benefits. Embarrassing question #2: have you applied for the equivalent of Social Security benefits including medicaid/ medicare for Max. He could be eligible on his own. Sorry for nosiness - all information could possibly help another reader.

  36. Ahhhh. . . the big question.

    I'm sure I'll be a ball of nerves when/if I get pregnant again, but right now my fears are more about lack of sleep, strainging our finances, and all the other things I worried about before I had Charlie. I'm not "over" the special needs thing, but I am at peace with it and I love Charlie so much.

    Like you guys, Charlie's issues are considered "a fluke." I do think that I will go to a high-risk OBGYN since my original guy was asleep at the wheel. I want someone who's ready to do an ultrasound or stress test at a moment's notice!

  37. I had a typical child, and then typical twins, before one of the twins had the accident and caused her disabilities (not genetic or birth related). Now, I'm anxious to have another before she is too big for me to carry while pregnant and manage a newborn too! Nervous, yes - but the right decision in the end. I think Cici and her siblings would benefit tremendously, and would heal our family a little bit. Now I just have to be ready! Who knows when that will be!

  38. we waited 3 years before talking about having anither child. not out of fear but izzy just kept being dx with diffrent things adn we wanted things to be stable and steady before we could think about it. we did have alot of ?'s from friends and poeple. I did find them pushy at times. even some who had children with special needs btu just diffrent than izzy's where pushy and I was annopyed lol we have no famliy close by and Izzy has alot of dr apts so support wa an issue as well. We decided that we wanted another in the spring and i am now due in may. I have found that though this pregnacy I am calm and not too worried. I did everything i could with Izzy to ensure the best chances of a healthy baby and she was very sick so I am not oging to stress over our babys health now it is not in my controll. what will i do if this one need speacil care? Same thing we did with Izzy we took a day at a time sometimes we took seconds at a time. I do worry about missing Izzy's apts if I go into labor early or late because her drs have huge waits and her apts are important but again out of my control so all I can do is enjoy the last moments of Izzy as an only child and help her prepare for the new changes in our family. Our drs are of course watching this pregnacy and have already made some plans for apts after the baby arives but whatever comes we will find strenght. but really even this baby is healthy it is going to cause loss of sleep, tears, fear stress and an unmeasureable amount of joy. one freinds said this baby may be the most worked up healthy baby in history:) Izzy is enjoying watcing mom have so many dr apts:)

    I thin i have typical worries. how will i feel with two chidlren will they get along, will izzy be gental how will i manage my time and attention between two ect

  39. maybe i will be able to take the time to edit my posts!!ugh that was awful!!! sorry for all the typos izzy is in a new brace and sleep is a rare thing lately!!

  40. my hubby and I considered having another child together (he is Queen Teen's step-dad), but then decided against it because we felt we couldn't provide attention to two children when Queen Teen takes up so much energy and time. It wouldn't be fair to either child. Logistically, I didn't relish the idea of keeping up with an able bodied toddler who would dash off while I'm helping Queen Teen out of the car. I can't leave her alone, and I couldn't spend enough time with an able bodied child who would need to run at the playground. Sometimes I wonder if we made the right choice, but it's too late now to have another child. Instead, we both devote our energy to the one child we have who desperately needs all of our attention.

  41. Well, this is a little off topic maybe... We have friends whose dear daughter is severely impaired due to a salic acid storage disorder that caused leukodystophy or significantly malformed brain dev't or mylenization thereof. They learned that it was some rare recessive mutation result and mentioned to me once that they would not risk having more biological children, as their sweet girl is truly devasted by this condition (g-tube, nonverbal, non ambulatory, little meaningful connection other than a beautiful smile). My own 2 children required fertility assistance due to a known male factor and once done, we had 4 embryos left stored for a year. Before donating the embryos to research (we couldn't give them to strangers), we offered them to these friends (they declined, not seeming offended or anything, thought it was nice that we asked). I did explain I knew it was an odd thing to offer and I in no way meant it to be hurtful (we also offered them to a family member who is gay). I always wondered if it was the right thing to do... Thoughts?

  42. Anonymous, first off, I am always glad to hear about successful infertility treatments, I know a lot of women who have had them.

    I think that was an absolutely incredible offer to make. While it certainly is an unorthodox gesture, it's great that your friends understood it was coming from a kind place. If I were in their shoes and a friend of mine had offered me the same, I would have been grateful at the very least for for the possibility.

    As infertility treatments and embryo storage continue to boom, I think there are going to more and more scenarios like this, more questions raised about how to donate unused embryos.

  43. My partner and I plan to have another child (well, it'll be his first as he's not Orion's dad). I don't worry too much as Orion's hemiparesis was caused by an accident (his dad accidentally dropped him down the stairs at three months) rather than something like a stroke or anything that might be genetic. I know for sure I will be flippin' terrified of carrying number 2 up and down the stairs though. :o(

  44. My son, who is almost six, suffered a brain injury at birth, and has global developmental delays as a result. Shortly after he was born, via emergency c-section, I suffered an Amniotic Fluid Embolism. (We were told, and believe, the two were not related. I won't go into the details of all of that here though.) It's incredible that either one of us are alive today.

    Right after he was born, my husband and I said we absolutely would not have any more children. As time passed, we chose to meet with a High Risk OB who agreed to follow us in the event we did choose to have another child.

    Eventually, we actively made the decision to try for another child. (We tried for 4+ years to get pregnant with our son, attempted infertility measures, and were eventually told it didn't look like we could have children. We surprisingly ended up getting pregnant on our own.) I did get pregnant again, but soon suffered a miscarriage, which was devastating for so many reasons.

    We waited a few more months and tried again. Baby & I were followed very closely during the entire pregnancy. I definitely was worried, not only for my baby but also for my myself. Yet, an overwhelming feeling that "everything was going to be OK" generally would win over the fear.

    At the same time, being ungodly sick throughout the pregnancy also did wonders for keeping my mind off all that things that could go wrong. Looking back, I can say that was a blessing, but I certainly didn't feel that way at the time.

    Our little girl is now almost two years old and is very healthy, although definitely a little firecracker. ;) She is an absolute joy and, beautifully completes our family. (I am eternally grateful for the two children I have, yet, after experiencing what I did with both pregnancies, I have no desire to EVER be pregnant again.)

    Our feeling is that the birth experience with her did help to heal some of the pain we endured from our previous traumatic experience.

    I am glad we waited a while to have another child. (The kids are almost four years apart.) I was able to devote plenty of undivided attention in the earliest stages considering all of the doctor appointments, therapy appointments, etc. Now, as he benefits from his time at early childhood, I am able to spend one-on-one time with my daughter at home.

    Also, that first year with a newborn and a child with special needs was incredibly tough for me. Life has definitely gotten to be more manageable as both of them have gotten older.

    I will also say that our son's interaction with his sister has undoubtedly been some of the best "therapy" he's ever received. And watching the two of them together is the greatest form of entertainment. :) It's an absolute joy watching them grow up as brother and sister. (I feel the "joy" a little less during those moments when they are fighting and screaming. But, hey, the fact that he can interact and communicate with his sister enough to "fight" with her is a wonderful thing in our world.)

    For those who are going through the decision process, I pray that you will come to "know" if having another child is the right decision for your respective family.

  45. I wrote about this on Hopeful Parents in November. Here's the link --

    My first developed a seizure disorder of unknown origin when she was three months old, but I went on to have two boys.

    Great discussion, Ellen!

  46. Very thought-provoking question. We have one daughter. She has CP and we don't really know why - we were basically told she was deprived of oxygen in the womb. Of course pushing for 3 hours and the use of vacuum extraction probably didn't help matters either! But I digress...

    I do want to have another child. We have been trying for over a year with no success. I really want Emily to have a sibling (we always thought we would have at least 2). I do have fears. I worry that I will have another child with special needs and wonder if I could handle that. But I press on with the "trying". I am content to leave it in God's hands.

  47. I am and now cannot afford another one

  48. Teddy had a blood disorder (NAIT) that could very likely happen again. I very much want another child, but between the risk of NAIT & our fear of how Teddy would handle a baby, we haven't tried. We deal with a lot of behavior challenges, & I fear for a new baby's safety.

  49. Elizabeth is 5 and we still haven't made the leap yet. We want to have another baby and feel that hopefully this time we will see how naturally it can be to parent a 'typical' baby. I just want to be sure that we have done all we can for Elizabeth to help her succeed. As Elizabeth was born very early I am sure bedrest will be in the future and I want to ensure that Elizabeth is more independant and does not need as much physical assistance. The biggest reason of why we should try is Elizabeth deserves to be a big sister, she will be an amazing sister.

  50. We were back and forth on having a second after Graham was born so sick.

    I got through that second pregnancy absolutely CONVINCED that something wasn't 'normal'. And I was fine with that.

    When she was born healthy, I was relieved, surprised, but relieved.

    For me, after having a severely sick baby, I figured I could handle anything that the Universe threw my way... I had a "Bring it on" attitude.

  51. Very interesting discussion. Fletcher was born at 25 weeks due to me developing severe pre-ecampsia/HELLP syndrome. Basically we were killing each other. They took him just in time as my platelets crashed and liver enzymes spiked the afternoon after delivery, and I was lucky that I didn't need additional medical intervention myself (although I had blurry vision for a few days, my kidneys temporarily stopped working and I was on a maxed out dose of BP meds... but all temporary).

    I am very high risk for reoccurance, and I just couldn't take that chance, since now Fletcher depends on me so much. So, we bit the bullet and did a surrogate cycle with the help of my sister and now Fletcher has a six month old baby sister. I was still nervous about the pregnancy, but once she surpassed 25 weeks, I just knew everything would be okay (not logical, I know). It was expensive, and it can be challenging balancing two who are total care (for the time being) but it is the best decision I could have made for us.

  52. Your post was honest and thoughtful. I have a son with down syndrome. Yes, I'm definitely scared about having a second child with special needs. His hospitalizations has been painful for all of us in the family. On the other hand, it sometimes feels very odd to even long for a child without special needs. It would be a totally different kind of life and I'm not sure if I would like it.

  53. Yes and no. I suffered a full uterine rupture during pregnancy and my son has severe cerebral palsy. My husband said no more kids, he just couldn't handle going though that experience again.

    However when my son was 8 months old, we found out we were pregnant again. We did spend 11 days in the NICU but I found myself coaching another mom...I was telling her how healthy our kids are!

  54. My son has a genetic condition that we haven't chosen to find out if we are carriers for. Even if we're not he does have a very mild form of myotonic dystrophy which he got from me, mine is also very mild - no symptoms. Having another child at the very least they could have a more severe form of MD so if we choose to have another we will probably be going with some high tech options. I am not sure I can handle having a typical child though, my heart is already broken by what my son has. I think a typical child would do further damage.

  55. I know this post was written ages ago but I wanted to throw in my 2 cents. Abby my 1 year old has CP. We both wanted another child. I'm now 2 months pregnant with my second. I havent told anyone yet, only my husband knows. I will admit I'm not that worried as I know the chances are low given that CP isnt genetic.

    Like Cristin, I took the bull by the horns and decided to try again. I'm a take whatever you get sort of person.

  56. I am SO glad I found this page and had to add in my 2 cents. My son was recently diagnosed as having a stroke in utero, I don't know the grade but it was mild. he also has a fisted right hand but shows improvement daily. We have wonderful therapists and I have to kick myself in gear to do more work with him on our own. Now that the holidays are over I'm already doing more. We have to get him walking!! I knew I always wanted more than one child and my son's stroke, by all accounts, was a fluke so I'm currently pregnant (weeks) with #2. We always wanted kids close in age- esp since we started having the later in life- I'll be just over 35 when #2 is born. Even after my son's diagnosis we knew we wouldn't get too far "off track". We didn't "plan" it but didn't prevent it and it happened quickly. I am glad it did as the therapists are putting in increases to his sessions- I might have wanted to put off baby2 because my son does need me but overall, given our situation is a generally good one, I feel the importance of a second biological sibling outweighs the struggles of having 2 (and one with special needs). I know people with Autistic first children who have more, my son's prognosis is thankfully a good one so I see no reason to not to but I was curious as to the risks of a repeat. I will be discussing my son's condition with my Doctor at our first prenatal visit- they are already high risk specialists but they see all patients. I expect to be placed on blood thinners and extra sonograms would be welcome to me! You have to do what works best for you and your family and weigh your risks with Doctors you trust. And adoption is always a beautiful choice too. Good luck to all.

  57. Thank you so much for sharing your journey! It gives us hope. I too, am also wanting a second baby but afraid after finding out my son was diagnosed with PVL and a seizure disorder at age 2-3. It was a uncomplicated birth and his neurologist has been unable to pinpoint the exact PVL cause but determined something occurred during pregnancy. As for the seizure disorder, inheritance could have been a possibility. I hope to have the courage this year to try again so he will have a sibling to share his life with.


Thanks for sharing!

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