Any other mamas of a child with SN here? - Mothering Forums
April 2012 > Any other mamas of a child with SN here?
AbbieB's Avatar AbbieB 02:30 PM 08-30-2011

My second child has down syndrome and leukemia.


I feel very positive about this new baby and I'm open to the possibility that he/she may also have down syndrome, but I would be lying if I did not admit there is a small part of me that is a little afraid.


Anybody else?

mylilmonkeys's Avatar mylilmonkeys 03:47 PM 08-30-2011

I don't have SN kids, but I'd like to give you a hug!  DS and leukemia is a lot to deal with!  How is treatment and everything?  Is it in remission yet, or is this a new diagnosis?  You are very brave.  Hang in there!

moss's Avatar moss 06:20 PM 08-30-2011
we have a one in four chance of having another child with autism spectrum according to a genetecist we saw years ago. Im not too worried about it. Ds is great~like amazing. smile.gif he's so smart and happy.

Im hoping that by staying on track with biomedial stuff from the getgo with this pregnancy our risk level is less than the genetecist's numbers. If we do have another child on the spectrum we already know what to do. It would be a lot easier the second time around.
justKate's Avatar justKate 03:03 PM 08-31-2011

DD has sensory issues that result in some unusual repetitive behaviors.  The first year of her life was a nightmare, to put it gently, but we've done a lot of learning and adjusting expectations, etc., and things are pretty good now.  The hardest part with her now is being out in public, where people feel the need to comment on her conduct.  Like "oh, she's not happy, she wants to get out of the stroller" or "I think she needs to go potty"--really--total strangers in Target feel the need to tell me these things about my child.  And I never know what to say, because she looks like she's just, as my mom would say, "acting out." 


So with this one, DH and I joke that we're prepared for anything.  Chances are low, IMO, that this one will be as difficult as DD can be, so we're not going to stress about it.  And TBH, if this one is exactly like DD, s/he will be PERFECT. love.gif


AbbieB, my second grade teacher (went to our church) had a boy with DS and then had five or six more children without it.  She felt like the biggest thing she could do for her son was to give him a big family to love and protect him.  I always liked that idea.

AbbieB's Avatar AbbieB 04:22 PM 08-31-2011

DH and I agree that another sibling would be wonderful for DS. (DD too!) A genetically typical child would be great, another child with Ds would be great too. No matter what, more love and support for all of us.


I just worry about having to go through more scary medical stuff. But, when I remind myself that there are no guarantees in life, I feel better. Any child could unexpectedly need major medical attention. Accidents happen, illness sometimes gets serious.


DS is just about one year out from his diagnosis (9/5 is the day.) He is really doing well. He's been in remission since October. He still has 2 years of chemo ahead of him, and of course the cancer could come back or there could be side effects from all of the drugs. But he is a healthy vibrant child right now, what more could I ask for?


I got some good news from his doctors today. All of the drugs that he is taking are processed through the liver, and are excreted in his stool. So no more worries about hurting the baby if he pees, sweats or cries on me. And DH will be taking care of ALL poopy diapers from here on out til April! (If he needs a change when DH is around, I just need to glove up. No big deal.)

justKate's Avatar justKate 12:30 PM 09-01-2011

That IS good news! 


Abbie, I hope you don't mind me asking, but will you be doing the nuchal fold screening for this babe?  I sometimes wonder whether it would be better to do it and *know* so that I could be prepared, or not do it...I wouldn't terminate, of course, but I wonder whether its better to know or not know.  I'm sort of a planner....

AbbieB's Avatar AbbieB 02:17 PM 09-01-2011

I am wrestling with this issue. I know with certainty I would not terminate.


DH and I have previously chosen not to do any testing of any kind. DH is still of that mind. I don't know if he has really thought about since we first made the decision when pregnant with #1. This pregnancy is so much more real to me than to him so I am forced to think about it, KWIM? So much has changed in the last 8 years, I feel the need to rethink it to see if it is still the right decision.


The nuchal fold screening is not 100% accurate or diagnostic. I have looked at the stats and it gives me pause. False positives and false negatives are real. I would not wish to risk a miscarriage by getting an amino to know for sure one way or another. I would not want to have 4 or 5 months of worry hanging over me. I want to be able to labor with joy instead of sadness.


For me, not knowing about DS was a good thing. Of course there was a tremendous amount of pain in the first few weeks after his birth, but I had my beautiful son to hold, and I could look at him and see he was OK. Holding him skin to skin is what healed me.


But on the other hand, if I am carrying another baby with Ds, it would be nice to know that there is not a congenital heart defect. My son does not have one, but so many other kids I know with Ds did. Although, none of them needed any immediate care after birth, so it's not like a heart defect means I would automatically loose a baby if i did not know.


I know it sounds crazy to most to even be questioning getting a screening after saying the above.


What I most want is to avoid a c-section, for both me, and for my baby. After that, I want to avoid overly cautious NICU visits. Testing and screenings could mean that I get dropped automatically by local care and get slapped with a high risk label. Both of my other births would have been c-sections had I been in the hospital, due to my natural labor pattern, not because there was ever a problem with the babies. DS would have been an automatic NICU because of his Ds, just to do testing and to be cautious.


I really need to find a local health care provider too. (I'm only 6 weeks, I have a little bit of time.) I would love to birth with the same out of state midwife that was with me for my other births, and she has already said she will come. I think I might want to just hand a little responsibility back to someone local, at least as far as prenatal care goes. Then, maybe I will be able to make a better decision as I see what my options are. I know that any testing I would decide to do without local care would require a lot more work on my part and a lot more red-tape like hassle. I learned with my last birth just how challenging it can be to do something outside the norm where I currently live.


It is so nice to be able to talk about this stuff. There is no one IRL I can talk to without having to deal with judgment and their own worry and other emotions. Thanks for listening.

mistymama's Avatar mistymama 02:39 PM 09-06-2011

Abbie, I've only been lurking here, but I will introduce myself since I can totally identify.


As you can see from my sig - I had a baby boy born last September, and he only lived for 10 weeks. He had a very rare brain malformation called lissencephaly (smooth brain). We went through all of the genetic testing, and they could not tell us what happened. Many thought it was infection (which is less than 1% chance of recurrence) but it could also be something very rare, and genetic (but unable to be tested for) and that could carry up to 25% chance.


I'm 6.5 weeks, due at the end of April. I'm trying to have faith and trust that this is the child we are meant to have .. but at the same time, we are in for a very high tech, highly monitored pregnancy. 


I know it's a very personal choice .. but after having our baby with liss, we would terminate if it happens again. Now I would not terminate for downs, but lissencephaly is very severe, with a horrible quality of life, painful seizures, the list goes on and on.

mistymama's Avatar mistymama 02:40 PM 09-06-2011

I meant to add that I have started a blog to journal this pregnancy .. if anyone is interested in our story you can read more


I hope to participate more around here, I'm just cautiously joining. Our first OB appt is Thursday, and depending on how that goes, I be around more.

AbbieB's Avatar AbbieB 03:06 PM 09-06-2011

Mistymama, I completely understand. I'm so sorry for your loss.


dust.gifSending you good vibes for your OB appointment.


mistymama's Avatar mistymama 05:54 AM 09-07-2011

Thanks Abbie.  Glad there is someone here that understands the challenges. Wishing you the best as well

DeChRi's Avatar DeChRi 09:50 AM 09-07-2011

I am mama to 3 DDs, ages 12, 3.5yr and almost 16 months.  My youngest two have eosinophilic gastrointestinal disease.  My 3 yr old is doing better.  She is so far 75% symptom free with damage to her GI tract healing, as long as she avoids all dairy, soy, corn, egg, wheat, beef, citrus, nuts and fish.  The condition is chronic so she will have diet long term to stay in remission,   My 16 mnth old currently is unable to eat any foods, including breastmilk, regardless of my diet.  She lives on a prescription powdered amino acid type formula used for age 1 to 10 with this condition. 


There is a genetic component.  I BF #1 for 4 yrs, #2 for 2 yrs, and #3 got too sick too fast.   DD2 was vomiting profusely from the start, but the damage didn't really hit her for a couple years.  I am petrified this baby will have the same.  It was the hardest thing I have done to give up nursing for #3. I had to quit working to care for both of them.  Our entire life revolves around not feeding our kids.  We wake up nightly with one of the other sick, unable to swallow, chest pain, doubled over in stomach pain etc.  I just pray #4 avoids it.

kbochniak's Avatar kbochniak 03:48 PM 09-07-2011

My DS has Cystic Fibrosis.  We didn't know we were carriers until after my son was diagnosed at 2 weeks old.  We used IVF/PGD to get pregnant this time to avoid having another baby with CF.  There is a 25% chance we would have another child with CF if we just rolled the dice and got pregnant on our own. I agree that having siblings and a loving family is one of the best medicines for my little guy.  Fortunately, he has done AMAZINGLY so far and we are very thankful for that but with CF things can change quickly.