I am not sure what I am looking for here. Just input, but not necessarily advice, I guess. My 11 month old has spina bifida. He's a joy and if I could have 10 more just like him, I would. With his diagnosis, though, we have lots of visits to our clinic an hour away as well as 5 surgeries so far. That's not to mention the worry that his shunt has quit working or that he is in pain for whatever reason. Anyway, I am at the point where I want to talk about future children, although DH is not quite there yet. He is unsure if we should have more bio children, because, although we love Gage more than anything, we're not sure we want to chance another child with sb, possibly more severe. I have read that our chance of having another child with sb is now 2-3% (.1 percent for general pop). We know we want more kids. We just don't know if the way to do that is through having bio kids or adopting. He wants to talk to a doctor. Have any of you gotten advice from a doc after having a child with special needs?
The other complicating factor for us is that it took us a year and 1/2 to conceive Gage. We were on a break from fertility treatments. The though of going through all of that again makes me crazy as well!
08-06-2008, 08:36 AM
I can relate somewhat. My dd Megan has autism and her and my next child are 5 years apart in age. I did not know about Megan's autism until she started preschool at 3 years old. I did not have friends that had kids yet and I had never been around kids so I thought I was just a bad parent that could not get her kid to mind and be like all the other kids. Now I know autism is different then having SB but its was her special need and it took me a long time to want to have any more kids.
I was so worried about every thing I ate with my next pregnancy and I delayed vaxing my second and third. What ever they say that can cause autism I would avoid fish during pregnancy.
08-06-2008, 08:50 AM
Thanks for your reply, Rachel. It's weird. Like I said, I am an OT and I see kids who have siblings and those that don't. One thing that makes me want to have more kids is for Gage's benefit- so he has someone to copy and chase after. It always seemed like those with siblings did better. I don't know. I go back and forth. I definitely want more kids, and even soon, but I just don't know if I can handle the worry and strain of carrying another one and wondering if something is wrong the whole pregnancy, then, the guilt if something IS wrong, you know?
08-06-2008, 11:13 PM
I had severe pre-eclampsia and HELLP Syndrome with my first. I went through tons of internal debating and freaking out before having more. It took an accidental pregnancy and miscarriage to convince me that I was ready. Oh, and then we found out that my little preemie was autistic. I am glad that I had already given birth to #2 before my son was diagnosed. All the literature I read put our risk of repeat autism too high for my tolerance, but both of my younger daughters have been a wonderful influence on my son (and we found out I have a blood clotting disorder, so I was able to dodge the prematurity bullet on the other two).
My son only had severe reflux and retinopathy, but his first year was really tough. If it were me, I would wait another year or so to see if things settle down with your little guy. I can kinda relate as I agonized over putting another child through the misery of extreme prematurity. Everything I read showed my likelihood of getting sick earlier and more severely. So the thought of another child was a real leap of faith.
It's late and I'm babbling a bit. I guess what I mean is that things may get easier as he gets older and the first year is just not the one to base these decisions on.
08-07-2008, 07:46 PM
Well, what Kearnan has is highly unlikely to recur, I know that makes a difference when thinking about these things. Kearnan is labeled with PDD NOS by the school system, but according to his Dr's and all of the testing he's had he actually has encephalitic brain damage as a result of his MMR vaccine. So the likelyhood of us having another child like Kearnan is very small, even if we were to continue vaccinating (we don't for multiple reasons). I know for some that really makes the difference. I love Kearnan, but I would be liing if I said I thought I could handle more of him. There isn't enough time to get to that many therapy and dr appts. Plus I will never stop feeling guilty about what happened to him, he would be a normal happy little boy still if I hadn't let them give him that shot. But that is a whole other discussion.
We actually didnt' decide to have another child. Even before Kearnan regressed I didn't have it in my plans to have more kids. After, with everything that was going, the testing, the appts, and just life, it was the furthest thing from my mind. But we got pregnant by suprise. It turns out we didn't get to bring our baby home, she was born still at 22weeks gestation. Then we had a huge decision to make. Being pregnant with Arawyn made me realize how much I wanted another child, and not only that, but how much Kearnan really wanted a sibling. But now we had the fear of losing another baby to add to the other what ifs. Could we really handle two kids. Would Kearnan's needs be met with a sibling around. Would something else go wrong with this baby. But we decided we just really wanted another baby. It took over a year of TTCing to get pregnant with Tharen. Ironic considering I didn't try with either of my other kids, it just happened. Now I won't say it's been easy. But I'm glad we have Tharen. Kearnan is a good big brother, most of the time. He's been doing quite well since we started biomedical interventions, and having Tharen around has forced him to socialize in ways he normally wouldn't. Plus it forces him to face his problems with loud sounds and constant movement. Tharen is something of a wild child. And Tharen, for all his crazy wild energy, is wonderful about being drug all over the place for Kearnan's apts. Since he was very small he has taken well to constant change in scheduels and to being drug around from place to place. I do think having the kids so far apart in age has helped as well. THey are 4.5 yrs apart. I don't think I could handle two normal children 2 years or under apart. I am certain things would have been even harder for Kearnan when he was much younger and in the very begining of his diagnosis and therapy. I can't imagine having a new baby while Kearnan was still in the early days after his regression, when he never slept and spent all of his time screaming. And it was nice that we were already in a routine of therapy visits ect by the time Tharen came. We knew what to expect and what we would have to do.
Only you know if you are prepared to take on another child. I don't think it would be a bad idea to talk to a geneticist and see how you feel about the information you get. Having a special needs child I spend alot of time with other parents of sn kids. I see lots of kids and their siblings. I do think that in most of the cases the kids with siblings, older or younger, seem to do better. Like they have more support or something, maybe just something more to strive for. You would think their parents have to divide their time between them and would have less time for therapy ect, but it doesn't seem to matter. It's like living with a sibling is its own kind of therapy. But I know it can be hard for the parents, especially in the early transition days.
08-08-2008, 01:19 PM
our son has a chronic kidney disease. We actually had the "more children" talk right after her diagnosis because its a genetic disorder, and can occur in 1 out of every 4 children we conceive.
we decided to wait out the first couple years... wait till he ws 4 or 5 or abut that age to see how hard the long road of management was. God had other plans. i am pregnant now, and due in a little less than 9 weeks, but so far this baby shows no signs of bartters syndrome.. so we are happy about that. It is a hard decision. we have a 25% chance of recurrence, and decided to wait and see for a while. (they say alot of times the first few years are the hardest)
08-08-2008, 01:24 PM
Thank you to everyone for your responses. It really helps to know that other moms went through the same decision-making process that we are.
08-10-2008, 06:23 PM
We went throught the same thing after Payton was born. We couldn't decide if we really wanted another one in the first place, but then if we wanted to chance another with SB!
We waited until she was a little more indepentant, around Kindergarten, and decided we wanted to try. We talked to not only my docs, but hers at children's hospital as well to get all the info we could. Basically what they will want you to do is take 10x the regular recommended dose of Folic acid at least 3 months before you even start trying to build up your "stores".
We also went through genetic testing with Payton, and hers is not a result of genetics, but when we got pg with Nathan, we found that I have MTHFR, which I can't remember what it stands for. It is a gene mutation, mine is a single mutation of one gene, but it can be much worse. Basically I don't metabolize Folic acid properly, so there is only about a quarter of what I take in, actually in my body. I am sure you have heard all about it since you found out about your little guy, so you know the importance of it in the VERY beginning of pg.
You should talk to your own doc about getting pg again, and ask about the testing, and they will tell you about the increased folic acid in advance. Talk to his docs as well, they have more info sometimes than an OB. We thought long and hard before we started trying, and had more u/s than I can count, as well as the tests for me. It is considered a high risk pg, so the docs watch it a little more closely. It was a nerve racking few months before we found out that all was fine with our son. I totally know where you are coming from!!
GL, and feel free to pm me if you want to "talk" more about it!!
BTW, we also have an older dd that is also "healthy", so Payton is our only one with SB.
08-11-2008, 09:55 AM
mythreemonkeys- I was hoping another SB mom would post! Thanks for the info. I haven't had any testing or anything, but if lack of folic acid really is what caused Gage's SB, then I can't help but think I may have the same thing you do. I drank OJ like it was going out of style before the indigestion kicked in, and loved spinach salads, among other folic acid rich foods. Anyway, thank you for your experience. I really need to schedule an appt. with my OB anyway, and will ask at the next clinic we go to.
08-11-2008, 10:55 AM
Well with my oldest his issues aren't genetic so there wasn't that worry(though I think once you have one child with special needs it's so much easier to think of all the what ifs that can go wrong in a pregnancy) and we do have one more child born after him that's perfectly healthy. But we're debating on whether we'll have a third or not. We decided to have Ethan because we wanted a second child and Nathaniel was doing so well. He'd been shunted at a year old and hadn't had any issues. Then after we had Ethan it seemed like everything just started going wrong at once and we found out other issues Nathaniel had as well.
In the last couple of years we've found out Nathaniel has hormone issues, kidney issues, and now we're dealing with two surgeries in less than a year, with the possibility of a third in a few more months because of fluid on his spine related to his chiari malformation. Our worries are almost solely with the financial. Can we really afford to raise a third child if Nathaniel continues to have health issues as he gets older?
And then there's the worry about the attention we can give our other children if we're having to constantly worry about him. As much as I love Ethan it was such a relief to have my parents watch him while Nathaniel was in the hospital this last time, so I was able to focus solely on my oldest. I don't know that it's fair to my current children to have another one and divide my attention even more, since Nathaniel by necessity takes up so much of it. As much as I want another baby, these issues are holding me back. :(
08-11-2008, 12:59 PM
Our dd, Ellie, has sb as well as a host of other problems, including two extra chromosomes. She is 3 yrs old; I've let my dh know I'm ready whenever he is to have another child:goodvibes: . She's had 11 surgeries (with 2 more coming up at the end of this year). Like many other parents who have posted, I'd have another one of her in a heartbeat, no problem. The docs say her "differences" are not related to her genetic abnormalities, which makes us feel a bit better.
My dh is concerned about the amount of attention Ellie gets and, that if we have another child, he or she might be jealous of Ellie. But Ellie is going to have to have surgeries all throughout her life. We'd let her sib know from the start that Ellie didn't choose to be born this way and that God made her different, just like everyone else is different. Some of us just have more differences than others :thumbsup: . We'd also let him/her know that we don't love them any less; Ellie just needs some special attention at certain times because of her added differences. I know it sounds pretty simple, but if and when the time comes to explain it, it's going to be a lot harder for a small child to understand.
We're not even going to try to get pregnant again until Ellie is about 5; that'll be after her largest and most complicated surgery. And even then, dh has indicated he may not want another child. We just feel blessed we were able to get pregnant and have a biological child of our own. I guess we'll see when the future becomes the present.:giggle:
08-13-2008, 08:07 AM
I hate to say this, because it sounds so terrible, but it may make someone else feel better about making this type of decision. My husband decided to have a vasectomy after having our daughter with sensory processing problems and food allergies. She's emotionally high needs, and he couldn't get over the fear of having another one who is also high needs. I had to support that because I could see it ruining our marriage if I were to push for another one and then go through the same thing again. My husband also has a tendency to withdraw from stressful situations so I could not see myself dealing with two high needs kids on my own and not totally resenting him. We love our daughter with all our hearts and wouldn't change a thing, but at the same time we feel like she is all we can handle. I feel like a terrible person admitting that, especially when so many of you have so much more to deal with than just SPD, but it's true.
08-13-2008, 12:57 PM
Don't feel bad! That's not terrible at all! I think you are using your head and being very wise by not adding more to your family than you can handle. I think during childbearing and raising, many women forget to be wives and nurture their marriage as well. Thanks for your perspective!
08-15-2008, 08:21 AM
Hi mama's. It's so good to hear other mama's having the same kind of questions I have. My little guy is Matthew and he has Cerebral Palsy and Sensory Processing Disorder. It's because of a birth accident, so it's not genetic. Still, it frightens me to think of having another child who might require so many therapy appointments, so many trips to the doctor, so many sleepless nights worrying about him...the likelihood of having another child with CP/SPD is small, but I'm going to be 35 in just a few months, and the advanced maternal age scares me. Plus, what if Matthew grows up and feels like we had another baby because there's something "wrong" with him? What if I can't give him the attention he needs because of a new baby? OR what if the new baby doesn't get enough attention because of all the attention Matthew needs?
I haven't got one bit of advice, but your post spoke to me, because I totally understand your fears.
08-15-2008, 08:31 AM
I'm glad to see that other moms have the same fears as I do too! I never thought about Gage thinking we had another because he wasn't good enough. In fact, I would be afraid he would think we DIDN'T have another because he was just too much or something. The different fears we invent is kind of funny. Not to say we don't have valid fears- we do. I just think when we get going, we make up all kinds of stuff!
08-15-2008, 09:34 AM
I needed to talk about this so badly seven months ago and couldn't find a forum. Our daughter Lyla (she's almost 5) has had epilepsy since birth, has developmental delays (probably from aggressive medicating for seizures) and we have almost lost her several times. She requires constant attention because she doesn't walk and isn't potty trained, etc. She is also the love of my life. We had planned to have another baby right away but once she was born we haven't had time to look up let alone hook up :blush: . Anyway, Lyla had a good spell last year and we decided we would go ahead and try to get pregnant. Much to our surprise it happened right away. I have to be truthful and say I have gone through a lot of emotional hard times since getting pregnant. Especially for some reason when I found out I was going to have a girl. Could I love another daughter like I do Lyla after Lyla? I was so sad thinking that I would see another female child develop normally while missing it with Lyla....probably sounds worse than it is, but that's the best I can describe it. Also, we do not have a real diagnosis, so we do not know beyond any doubt that there is not a genetic cause (though she has been thoroughly tested by genetics). To top it off, right after I found out I was pregnant, Lyla's femur broke during a seizure. It was the beginning of three surgeries and she is now in a spica cast as I begin my third trimester. And don't forget the trouble my teenage daughters have decided to visit upon me this summer-I guess they haven't been getting enough attention.....it's never easy around here, but I can honestly say that at this point, I don't regret getting pregnant and I am so excited to be welcoming another baby into our home. In some ways it has given us back a sense of normalcy that we lost with Lyla's birth. At this point, I truly feel that we are ready. Everyone says another baby may challenge Lyla to do more physically and that would be good, too. However, I do not think all fears will be gone until I have given birth and have a healthy baby.
08-16-2008, 12:12 AM
I never thought about Gage thinking we had another because he wasn't good enough. In fact, I would be afraid he would think we DIDN'T have another because he was just too much or something.
I never thought about it that way either. :giggle2:
I know I let my mind get away from me sometimes - most of my fears are unfounded and unrealistic. But it's hard to make them go away, you know?
08-16-2008, 07:05 AM
I have an 8 year old with SB, it took us 7 years to decided OK lets try again.
I was scared to death, but was ready for anything (I think)
We have an almost 2 year old now and I am so glad we finally did have that next baby!
PS, are you a member of SBMoms-n-Dads????
08-16-2008, 07:44 AM
I have an 8 year old with SB, it took us 7 years to decided OK lets try again.
I was scared to death, but was ready for anything (I think)
We have an almost 2 year old now and I am so glad we finally did have that next baby!
PS, are you a member of SBMoms-n-Dads????
No- I'm not even sure what you're talking about!
04-29-2009, 10:25 AM
I just started looking through my subscriptions folder and decided to bump this back up. We still are not trying for #2, but this discussion still comes up. I would love to adopt, regardless of any issues with DS. DH sees adoption as an absolute last resort. I would love updates on any of you and any comments from any newcomers!
04-29-2009, 07:19 PM
after the diagnosis of our 7 year old we decided to have no more.
of course our diagnosis is genetic, so that does make a difference.
we already had our daughter and was preggo with number 4 when we got our diagnosis...
so my hubby had a vasectomy right after number 4 was born, then 2 years later number 5 came...so i guess God had other plans for us...but we didnt want to chance having another child with CF.
05-09-2009, 01:55 AM
I think about this subject often. We have three boys, 8, 4, and 14 months. Our youngest has End Stage Renal Disease and is on dialysis 12 hours a night. With that he has frequent hospitalizations, many meds, a feeding tube, and daily shots. Statistically speaking, 30-50% of infants on dialysis don't make it to transplant. We're hoping he will receive a kidney in the next few months. But, what most people don't know about kidney transplants is they don't last forever. Though there is no real way to know when a kidney will reject they typically last 10-15 years so we have a long road ahead of us with our little one. He also could have CF. He's tested negative on the genetic test and positive on one sweat test but we haven't been able to repeat the results and at the time he was newly on blood pressure meds which can do something with aldosterone (raise or lower?) causing more chloride to be excreted.
Our plan right now is that it's not in the 4-5 year plan. I can't completely close the door. I can see that having siblings has immensely helped Logan. He is running all over the place and 99% of the time he doesn't act "sick." Our doctor has said we shouldn't let any of this stop us from having another child since though there is a slightly higher than normal chance of this repeating the likelihood is slim. He said just to wait until at least a year after transplant. We would have waited at least that long had he have been healthy, lol. I would like one more child. I don't feel as though our family is complete. My thought is that if he does have CF we will be done having biological children. Though I know I will be heartbroken. And if he doesn't, we'll talk about it in another 4-5 years. Hopefully he will be in between transplants at that time. For us, another thought to consider is that it wouldn't hurt him to have several siblings as they will be more likely to be a kidney match for him. Since he will need one every 10-15 years, his siblings may be more likely to help him than the average person.
05-09-2009, 08:04 AM
Thanks for sharing your thoughts, Jessica! Wow, you really have a lot on your plate and a lot to think about. I hope your little man does well and a kidney becomes available for him very soon.
Well, I revived this thread not long ago, and the funny thing is I was probably already pregnant at the time! I haven't been to the doctor yet, and I'm nervous. I know I will continue to be until I see a complete spine!
05-09-2009, 04:14 PM
Jess, congratulations! How awesome that the decision was made for you! It takes the contemplation and agonizing over the decision out of the equation. I can totally understand being nervous until the ultrasound. For me, next time I don't think I will settle my thoughts until after little one is born and we have a renal ultrasound. Logan's kidney issues weren't caught until he was a month old. it's so weird because in the very beginning it was all so hard and now that we're used to it even dialysis doesn't seem as bad. the risk of infection still does though. Funny because when he first got sick dialysis seemed like the worst care scenario. Now I know there are FAR worse case scenarios.
05-09-2009, 04:17 PM
You know, I think it's all a matter of attitude. My stepdad works with a man whose grandson has spina bifida- no worse than my son. From the beginning he has been all doom and gloom and "poor baby", etc. I think if you think like that you WILL feel sorry for yourself and your situation and your child will grow up with the attitude that he is broken and can't do anything.
05-12-2009, 12:05 AM
Jess, I think you're completely right. On that note, rememeber my last post said risk of infection was high. Well, sure enough, Sunday morning we woke up with Logan having an infection--peritonitis. He's had antibiotics for over 24 hours but we're at the hospital 3 hrs from home and I miss my big boys. Hopefully we'll be home tomorrow or Wednesday. True to form, Logan was the hit of the floor this afternoon running around everywhere. I will be so happy when he has his new kidney and the risk of infection is so much lower--well, at least after the first month anyway.
05-12-2009, 01:01 AM
I have pondered that question myself SEVERAL times over the past 7 years. My DS is deaf and has brain damage from medical malpractice. It isn't genetic but still has taken its toll on me both mentally and physically. My DH and I did want kids but that was before we found out about the brain damage. I found out when DD was 2 months old and my world fell apart on me. I had SEVERE insomnia for 3 years and the only thing that actually made it stop was I am having adrenal gland problems and it causes me to be extremely exhausted all the time.
DD also has issues. She is in OT, PT, and Speech because of low muscle tone. And I am actually thinking that her problems might be due to Marfan's Syndrome because of hypermobility, hypotonia, sunken chest, very tall and super skinny. I am going to have her checked out shortly (insurance fun!).
But even with the 11 appts I have a week between the 3 of us and then the added 4 per month that I have, I still want more kids. My clock has been ringing for the past few months and if it wasn't for my IUD, I would probably be pg by now.
I know for me it is about what you can take. If the appts, and therapies, and doctors, and genetics aren't a problem for you, I say go for it. If any of that freaks you out with having a newborn, wait 6 months and visit it again.
05-12-2009, 09:52 PM
my situation is a little different. My middle child has autism and when I got pregnant with my daughter I had no idea. I really had my heart set on 4-5 kids and I went through a huge phase where I said no more because I couldn't handle it with his therapy schedule, some of the things we deal with, risking another child with autism (only because how would I fit another schedule like his in there) but I eventually got settled with it more and saw I could take it on. I waited till I felt everyone was ready. Including him. It's a hard choice to make but I think you know your boundaries. If not now maybe in the future you will be able to take on another child.