Special needs child and thinking of another baby

Julie - posted on 03/17/2010 ( 23 moms have responded )

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Hi,

I have a 5 year old son with global developmental delay, the doctors are struggling to find a reason for his delays. He has various problems, such as plagiocephaly (flat head) due to a weakness on one side of his body, general low tone and hypermobility in his joints. Anyway, we have seen a geneticist and they have given us around a 5% chance of having another baby with some form of disability, as they can't actually find anything genetically wrong with him, but our chances are slightly higher than normal purely because we already have a disabled child.



I was just wondering if anyone has had another baby after having a special needs child and what sort of odds you were given as to whether they would have problems and whether it turned out that they did have special needs or not. I know 5% isn't exactly a high chance, but I think it will be difficult to have my special needs boy and a "normal" baby, let alone 2 special needs one!

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Courtney - posted on 02/08/2012

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Dont let that stop you from having another,but i look at it as God will not give you something you cannot handle.

Iridescent - posted on 02/08/2012

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In situations like yours, it's a common fear to have the same gender for many reasons! You can hope. And you can even find out the gender, and there's a 50% chance your baby will be a boy. But if it's not and you can't cope with it, please seek a counselor to help you work through your concerns prior to the birth, so you can simply enjoy the new baby as a new baby. Even if this is a girl, healthy or not, she will never replace your daughter. Your daughter is as much an individual as anyone else. :)

Ursula - posted on 03/25/2010

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Absolutely! That is my first thought. But really you know your situation best. My oldest son is severely mentally impaired. He is blessed with 3 younger siblings. : ) It was never something we questioned. We always wanted more than one child. Has it been hard, yes, but anyone with four children will tell you it is a lot of work. The positives definitely outweigh the negatives. Ethan has loved it when his siblings reach his age cognitively, which is around 3 years of age, the joy he experienced having a playmate his "age," was wonderful. He so much loves each of them. My youngest is 4 now, and Ethan, who is 13, has the best times with him. I think it has actually been more challenging helping my typical children learn how to cope with Ethan's unpredictable behaviors and how he never seems to learn like they do, how to behave and act appropriately. We have never regretted having children after Ethan. Many parents of all children think parenting is hard work, and it is, but often I have been surprised that somehow we make it through challenging periods, just when you think you are going off the deep end, you realize you have what it takes to stay afloat. : )

Casey - posted on 03/19/2010

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I have 2 children. My daughter is developing "normally" and is right on track. However my son is globally delayed, doesn't talk ,walk , crawl, has a g-tube, seizures, etc. He's very much still like a baby and he's almost 2. He has a rare chromosome disorder that the doctors don't know much about. Anyways, my daughter was 6 months old when I got pregnant with him and while it is hard to have my kids 15 months apart and to have one with a disability, she has been awesome! She helps with his therapy, plays with him, and just loves and cares for him. To her he is "normal", she doesn't see him any other way and it has made her very compassionate. I feel truly blessed to have both of my kids and would not change it for the world. It is your decision and it's a big one, but there are positives that I believe out weigh the negatives. Good luck!

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Kate - posted on 02/08/2012

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I just found out today I am pregnant. I have a 12 year old boy, a 7 year old boy, and our 9 year old daughter has special needs (Trisomy). My fear is this: I don't want this baby I"m having to be a girl! My girl is so special and I love her so much. I don't want a child that is "typically developing"- I know I"m being silly!? I'm already jealous for my daughter of a sister. I really want a boy. I already have the one-of-a-kind best girl in the world. My boys are amazing too. But they don't have the challenges my daughter has. Can someone give me some sense?

Iridescent - posted on 03/25/2010

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You might (or might not) like to know this.
http://en.wikipedia.org/wiki/Rare_diseas...
"Although each individual disease is rare, the sheer number of individual rare diseases results in between 6% and 8% of the population of the European Union being affected by a rare disease.[5]"
The estimate I was given by our geneticist is that 1 in 5 children will have a rare disease. Another estimate I read was 1 in 10 children.

A 5% chance of your potential child having something go wrong is less than the actual average. People being mean and giving advise not to have children due to that are full of themselves and don't know the reality.

LeeAnn - posted on 03/25/2010

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I have two little girls, and my oldest daughter has DiGeorge Syndrome, and Autism. I didn't know anything was wrong until I was already pregnant with our second daughter, which was not planned. I discovered my daughter was delayed around her first birthday, and was about 4 months along. At about 8 months along, we found out that she had global developmental delays, and suspected she was Autistic. She couldn't sit up, crawl, walk, didn't talk much, and had many feeding issues. Later, after our second daughter was born we were finally sent for an evaluation to find the reason behind her struggles. She was diagnosed with Autism in March 2009, and after that eval, we were sent for genetic testing. In April 2009, we found out she had DiGeorge Syndrome, which is a deletion in 22q11.2 region. We had our other daughter tested, and she doesn't have the deletion, and has no delays. I trully believe God knew what we needed, and when. Had we known all of this before hand, we most likely wouldn't have had any more children, and would have missed out on a blessing. We have struggles, but we have much much more to be thankful for. Both of our daughters are wonderful, loving, beautiful little angels, and I wouldn't take anything for either of them. Our youngest helps her sister, like bringing her blankets, and her passy, a toy she likes, etc. Now we have the issue of wanting a son, and having people "advise" us that we shouldn't have any more children. I feel like it is each couple's choice how many, if any children to have, regardless of wheather or not one child is disabled. I find it very offensive when people "advise" us on how many more children we should have, because I know they most likely only come to this suggestion because our oldest daughter is disabled. If you and your partner would like more children, then have them! Don't feel like you have to justify your choices to ANYONE, it is your life. 5% may be a risk, and it may seem scary, but also think on the blessing you could be passing up by not having another. Best of luck to you and your family in whatever you decide!

Kim - posted on 03/21/2010

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I have a special needs daughter who is about to graduate high school and she has a younger sister that is as smart as a whip National honor society just inducted her. So as you can see it is possible to have a quote unquote normal child. Stephanie is wonderful and loving and I am glad that she has blessed my home but she seems to be a little spoiled and I set aside some time just for her sister Cassidy and thing do work out just seperate the time equally. It is difficult at times but I would not change a moment for the world.

Julie - posted on 03/21/2010

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thank you so much for all your replies, it has definitely given me some food for thought!

Annie - posted on 03/20/2010

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i have a 5 year old with down syndromeand then had a 4 year old with no problems, it can be struggling but i think if it was not for having another kids close to gether he would not be as far as he is, i have since also had another child i have 3 kids and even with my oldest being special needs i dont regret it he tries to do every thing that the other kids do i think it benifits him

Heather - posted on 03/20/2010

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i ended up having 3 kids and my two step sons move in with us after having a son with special needs and his delays were also unexplainable the girls were perfectly fine and they love there brother i think having a brother with sp nds has helped them be more thoughtful of otherrs and they look out for him and he loves them also children adapt very well and for that matter so do parents more so parents dealing with these issues adapt to what ever need to be done you just have to decide when your ready to no matter what the task i me it isnt always a cake walk but nothing ever is with raising any kids so good luck i hope this helped

Kelly - posted on 03/19/2010

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I am a special needs teacher and have worked with MANY MANY families.......and I can count on one hand how many families have multiple "special needs" kids. I have way more that have only one special baby.

Kelly Smolak
mom_x_3kids@hotmail.com

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Hi! We were not given a % by anyone....however, obviously we knew there was a chance! Our 2 1/2 year old is Autistic and ADHD. We found out at our 20 week ultrasound that our baby had a cleft lip and palate. So we are now dealing with all his surgeries along with my older sons therapies and preschool. I think it is completly your decision. Either you think you can handle it or not. For me, I was consumed by the thought of not giving my oldest a sibling because I was conserned the baby would be like him. A horrible thought I know, but it is very time consuming to care for him. They are now almost 4 and 16 months....they LOVE eachother! They are learning form eachother and we couldn't have asked for two better kids :)

Amy - posted on 03/18/2010

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I have 3 childre 6, 4, 2 yrs of age. I was unaware of any of my children having a disorder/condition until later. I was pregnant when my son turned 2. He wasn't talkin at that age so I sought an answer. He received OT and ST. My daughter was born a few months later. Again not realizing a problem with her development. She was 1 1/2 when I became pregnant w/my 3 rd child. When she turned 2 later that june, she too wasn't talkin and sought an answer. I took her to the therapy place her older brother was seeing. She was seen for ST and later was recommended for OT. By this time, I didn't think of my children as special needs for this to me was my norm. Both had some sensory issues, fine/motor delayed, speech delayed. My last son was born in november later that yr. As he got older, the private therapy place had shut down his siblings were seeing. After lookin through the records, and studyin the evals. I realized my now 6 yr old has aprixia (diagnosed a few yrs ago) and is still motor delayed. along with a few sensory issues. My daugher 4 1/2 is also motor delay, articulation delay/disorder, sensory issues and auditory issues. Yet not actual diagnosis for her. My youngest, surprisingly, 2, only has speech delay and is up to par with his motor skills on his age level for now. All of my children are still getting theropy and for how long, I am not sure. As far as your question, that all depends on you. If I would of had an exact answer I probably would have not changed my decision to have more children after my 1st. I am to an extent not ashamed to speak out anymore on my struggles w/my children to others. For I know that I can learn from others experiences and others can learn from me. Good Luck....God bless n be w/u n urs

Jenny - posted on 03/18/2010

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Yip been at a similar crossroad to you. My first child is special needs & is now 7 yrs - actually quite to your son. In my case they didn't consider genetics as they put is down to preclampsia I had in my pregnancy & that he was born prem at 30 weeks. However they gave a good chance that it would reoccur in the another pregnancy. Did take a bit of guts & lots of prayers to have a second child. Can proudly say I now mom to a 22 month old girl with appears no issues. What I found in the second pregnancy that the doctors monitored me very closely and did all the necessary scans and tests to see she was okay. My son however has found it difficult to accept her. What I do find is that she is a real stimulant for him and he has been challenged in a healthy way to progress his development by watching her & copying her. My thoughts are with you....

Tanya - posted on 03/18/2010

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Aah you have my very same concern.

I have a 1 year old with a rare chromosome disorder. My husband and I wanted to have another kid but were very stand offish b/c of the fear of having another special needs baby. I think a sibling would benefit my daughter in so many ways... well come to find out I am pregnant (5 weeks) so the decisions is made for us. I believe this is a blessing as I do not think my husband or I would willing have choosen to try for another baby, just because of the fear and the memories/painful emotions from my pregnancy with my daughter. We are very excited... and with the help of our OB have decided to treat this pregnancy as a "normal" one. It is a huge leap of fate and very scary after having a special needs baby. You always question what you can handle... how can you not when you are faced with the harsh reality of what can really happen to a pregnancy/baby that most people do not realize.

Good luck with your decision. Follow your instinct. Your already a "special" mom so you already know you can handle some of the toughest of things :o)

Leanne - posted on 03/18/2010

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my son has cerebral palsy, developemental delay, hearing impaired and hypertrophic obstructive cardiomyopathy. i was told he would never do anything and would be lucky to survive his first year. he is now 10. he walks the way palsy children do. loves his xbox and wants to be in the army when he grows up (although very unlikely) when he was 14 months i found out i was expecting again, major panic as each of my other 3 child had arrived earlier and earlier and having my son made me so ill. but i was 17 wks when I found out and just had to deal with it. she was born at 27wks and just looked like a grumpy old man. scan showed her heart was fine. then like my son she started to have brain bleeds 2 of them. and was told she would be like my son! she is now 8 and is very bright. very forward and has no problems. Id just say Doctors dont always get it right. the only advice i can give is 5% is not much and if your child is that 5% could you cope? and it is like having twins for a while. but ultimately so rewarding and my daughter brought my son on in his developement more than any Doctor, mother teacher ever could! she is amazing to watch although somethings bossy with him. good luck x

Pam - posted on 03/18/2010

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I have a typical 4 year old boy, a 2 1/2 year old boy with Down Syndrome, and I'm due in May (we don't know the gender). I knew with a child with downs I was automatically a 1% risk for another just based on that. I wanted another before I got very far into my 30's to keep my risk from jumping higher. I'll be 31 in August. I was very nervous and depressed from 12-15 when we were trying to do the integrated screening to look for the chances of Downs. Luckily this baby is 1/1900 risk so very low risk. My 2 year old had a 1/70 chance by the same screening.

In my case I felt that my 4 year old deserved to have another typical sibling if possible. And that when the boys got older, it wouldn't be fair to our 4 year to feel he was forced to care for his brother if something were to happen to me and my husband. And I felt that my 2 year old could benefit from an older and younger sibling. He could learn from both of them.

Good Luck with your decision.

Sara - posted on 03/17/2010

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Julie,

When my husband and I had our 2nd child, Katie, we were a bit surprised when we found out she had brain deterioration which was the reason she was low muscle tone and not able to walk independently. To this day, she's 3 1/2 now, drs. still have no diagnosis for her. But we knew before having kids that we always wanted 3. Our genetisist couldn't give us an answer if what was going on with her was genetic or not. In fact, she has baffled the drs. because what they see going on in her brain does not match her continual progress. So, we decided to have our third on faith that he/she would develop normally. He will be 1 next week and seems to be right on track in all areas.



There were a couple things I needed to consider before I was ok having another. 1. As our daughter got older she would just get heavier and heavier to lift...making it nearly impossible for me to lift her if I were pregnant. So I wanted one sooner than later. and 2. adn I concurr with Jennifer when she says, " they are all special and have something that makes them unique". so I realized that each child needs my attention in a unique way...and aside from developmental differences...they are a child first, with unique needs whatever they may be.



This is only a choice you and your husband can make. Just as words of encouragement. I'm so glad we did! It had been great for Katie! She has learned so much since her little brother was born and I think it's mostly because I was not able to run to her every time she needed me. She needed to realize that she needs to figure stuff out on her own too. She takes great pride in herself in her accomplishments and that she is a big sister!! The relationship she has with her brother is great and I realize there will be times that are harder but having another one has really made her realize it's not all about her. It has also been great for our oldest...when Katie was going through the walking/not walking stages. Anne, our oldest, asked a lot of questions and I really mourned not having them run and play together. They played differently...but it has been so fun to see her getting it this time around. So, best wishes in your decision!

Jennifer - posted on 03/17/2010

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i can tell you it is frustrating to have multiple special need s kids i have 3 special needs children already ages 7 5 and 18 mos all 3 have been diagnosed with and extreemly rare chromosome 18 abnormality called partial trisomy 18 partial monosomy 18 and an inverted duplication they have 15 deleted chromosomes and 28 duplicated thats pretty much all they know about this problem right now my husband and 3 kids are the only ones known to science at this time to have it it wasn't even known to exist till this last year when i had my kids tested to find the reason for their delays my 7 yr old is severly hearing im paired and wears hearing aids has skin problems developemental delays speech sensory and motor problems as well as only just being fully potty trained this last month my 5 yr old daughter has only 10 percent hearing loss thank god but has sensory balance speech problems and social problems she is still not potty trained day or night one has a one on one aide in school and the other is working on it the 18 month old just learned to walk he is not talking and also has sensory problems but so far no hearing problems the only one i planned on was my middle child it took me 7 yrs to get a diagnosis for my oldest once he was figure d out then they tested the other 2 and boom all 3 had a diagnosis we were not planning on any more children because of their needs but low and behold i am now 16 weeks pregnant with my 4th this baby has at least a 50% chance of having the same problem if not more the dr told us the likely hood was probably much higher this choromo problem has absolutely no research or anything known about it they all run the risk o neurologic problems and problems with the brain not seperating fully knowing this is scary but i am very excited to love another child they are very close with each other and i guess not knowing what it is like to have a "normal" child i am pretty sure i can handle anything ultimately it is a decision only you and your partner can make you and only you know what you are comfortable handling 5% is pretty low so if it were me i would probably go for it but like others said it will be a challenge but every child is a challenge no child is like another normal or not i would ask myself if this child is special would i feel i am able to handle it or if it were normal do i think i am cut out to handle one child with special needs and one who has none one good thing is the normal child would be tolereant of kids who are different i wish you luck in this decision think and pray about it and just remember that children are a gift of god no matter how they are made they are all special and have something that makes them unique

Iridescent - posted on 03/17/2010

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We have 5 children. All have had special needs at some point, but only 3 are requiring continued services.
1 - autism, ADHD, developmental delay, FTT, PICA, sensory disorder
2 - deaf until ear canal correction at 2, speech delay
3 - OTC deficiency, Alagille Syndrome (carrier? very little known), hypoglycemia, g-tube, IVAD, reflux, severe eczema, global developmental delay, hypotonia
4 - global developmental delay
5 - global developmental delay (severe), likely autistic

Our chances of a healthy baby...
With OTC - 50% chance of baby with it, 50% of those die at birth
With Alagille's - 50% chance of a baby with it, most die by 5 years
With autism - unknown, but obviously higher because of family history
Minimum - 25% baby die at birth. 25% baby with both OTC and Alagille's. 25% chance healthy baby. 25% chance baby with Alagille's OR OTC. So we have at most 25% chance of a healthy baby.

Lesa - posted on 03/17/2010

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I had 2 children with special needs in a row. The last one was an OOPS (pregnacy) as I was recovering from gall bladder surgery and having just had my third child. I was never given ODDS as to whether my 4th would have problems. However 7 months in to the pregnacy I went into pre-term labor and he was born 3lb 1oz. I honestly think I was just so sick from all the before that my body never recovered enough. To be honest my concern would be handling 2 children that need attention. Although I wasn't a single mom I found myself doing many things alone. Going to the grocery store, library, gas station etc. I would have to carry both boys around, one under each arm. Oh, forgot to mention that I also had 2 older boys. One of which had ADHD. This took a real toll on my health and sanity at times. I made it through however and the kids are doing great. Having another child can also benefit the older one in ways of learning together and also the want to be part. Be very aware of jealousy as is with other normal children sometimes. So just do alot of thinking about another child. Set up support and make time for yourself (& also spouse). Hope that helps. Ask me any questions if you like.

Tasha - posted on 03/17/2010

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I too have a child with global delays and his team of developmental doctors, neurologist and genetic counselors have not given a diagnoses yet because they are unsure as to what is going on with him. He is my middle child. If i would have known when he was a baby that this was going to be his life, I would have taken precautions not to get pregnant again. It is a struggle trying to take care of 1 child that needs more care than "normal" children. I know for myself its hard to take care of a 4 yr old that is developmentally 1 1/2 and still try and parent a 2 yr old. Its like having twins.

But the choice is yours.

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