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A place for moms and moms-to-be with special needs children to find support.

Moderators: B Michaelson, southernbelle, jessm, 1daysoon, reapage, Honey Bunny, unaffected, maddy, TrebleLily

welcome all!

Postby mamalynn » Thu Aug 10, 2006 8:10 pm

hello everyone!

my name is michelle and i am 23 weeks pregnant with my first child a baby boy! i was in my seventeenth week when p.j., my unborn son, was diagnosed with down syndrome. a few weeks later dh and i were told that he also has atrioventricular canal defect of the heart. this means he is missing the wall that divides the chambers and his valves are not connected to anything right now. this is very common in downs babies and is also repairable. he will have to have open heart surgery between 4-6 months of age. this is what terrifies me most, but from what i have heard and read it is purely a routine surgery and most babies fair well after the surgery.

i requested this board from elle because i knew i must not be the only one out there in need of a place like this. please feel free to join this board! ask me anything you want. i will try to give my best explanations and when that isn't enough i will post links.

take care all,
mlynn
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Postby nina1915 » Fri Aug 11, 2006 8:37 am

Michelle,

I hope your son's surgery goes well. I can't even imagine what you are going through. We found out last year that my 8 year old son is autistic so I don't know much about Down's Syndrome, but I do know that there are a lot of services available for special needs children. My son so far has not qualified for any, but I know there is plenty available.

What does the P.J. stand for? If we are blessed with another child and it's a boy we will name him Clifford John IV after my husband and I would like to call him C.J.

I'm not a very religious person but a short time ago I read about Saint Gerard who is a saint for mothers and mothers of special children. I was sent a Saint Gerard medal and just wearing it every day makes me feel a little better.

Good Luck!! :)

Nina

P.S. This was a great idea for a board.
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Postby mamalynn » Fri Aug 11, 2006 11:03 am

thanks nina and welcome. we can both learn a great deal from each other. i have a background in working with special needs so i am somewhat prepared for the kind of life ahead of me. people say i was drawn to special needs for a reason, p.j. must be why!

p.j. stands for parker jonathan. jonathan is my dh's middle name and the name of a cousin who passed away last year.

thanks for mentioning saint gerard, i will read all about him.

take care and talk to you soon!
michelle 41, dh 44,
pj 5 diagnosed with down syndrome & av canal defect of the heart (repaired 2007)
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Postby nina1915 » Fri Aug 11, 2006 12:04 pm

Parker Jonathan is a nice name.

There's a Saint Gerard website, www.saintgerard.com.

Good luck and I hope more mom's who need it seek some support here!
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Postby lizzen » Fri Aug 11, 2006 5:40 pm

Just thought I'd stop in and say hi! My name's Liz, I have an adorable son who will be four in a few days and am almost 28 weeks pregnant with another little boy!!

We found out at our 22 week US that he will be born with bilateral clubfeet. I'm being monitored by a peri to ensure that no other problems arise as clubfeet is sometimes associated with more complex syndromes. So far so good, I'm just praying that he stays otherwise healthy. I'm glad to see a board for this particular topic, it's hard when you feel like you're the only pregnant woman in the world not expecting a "perfect" baby.

BTW, mlynn, sounds like we have similar backgrounds. I was a social worker for kids with disabilities prior to becoming a SAHM, I guess it was all preparation for this! :D

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Postby mamalynn » Sat Aug 12, 2006 10:43 am

hi liz and welcome. i'm thrilled to have this board and a place of our own for special moms like us. i understand what mean when you say "perfect baby". dh and i have found it easier on us if we just tell everyone now what to expect. it makes a big difference in how we say it. in the beginning it was: it is a baby boy...but...
now it is: it is a baby boy and he has downs with a heart defect, we are scared but so excited for his arrival...
when they see how positive we are about p.j. then they have no choice but to be excited for us. the last thing we want is to feel robbed of all the excitement and well wishes just because p.j. is not the "perfect baby" in their eyes. it also relieves the awkwardness and they see we are open to their questions.
for the most part, everyone knows my background and tells me what great parents dh and i will be or they know so and so with a child who has downs.

i am being monitored closely by five docs: my primary, obgyn, pulmonologist, genetic specialist/peri & pediatric cardiologist. i feel so well taken care of. i am off work for now. all the stress of finding out and working sent me to the e.r. and labor & delivery already. now i am just taking care of myself and enjoying p.j.'s growth and constant movement! i am fine now.

are there ultrasound markers for these complex syndromes or is there another way to tell? like a blood screen or amnio? i had both done to diagnose p.j. and then the pediatric cardiologist used ultrasound to diagnose the hear defect.

i'm sorry if i am asking so many questions, you do not have to answer. i understand that it is rough. i am still getting used to everything.

anyways, take care and we wil talk soon :D
michelle 41, dh 44,
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Postby lizzen » Sat Aug 12, 2006 1:57 pm

Hi mlynn! Clubfeet usually occurs as an isolated birth defect and from what I understand is the most common birth defect of the lower limbs. About 10% of clubfeet cases are known to co-occur, however, with spina bifida and Trisomy 18. The Trisomy 18 is the one that scares me to death because, as I'm sure you're aware, there's not really a chance for survival beyond the first year. At my 22 week US they thought that he had not only club feet but a single umbilical artery as well. The combination of these two factors made a chromosomal problem seem very likely, but the peri confirmed a few days later that he had a normal three-vessel cord.

My quad screen was normal and he has no other markers so the odds are good that this is just an isolated birth defect. They didn't even offer me an amnio, which I take as a good sign. But the peri is monitoring me to make sure that no cardiac defects develop and his growth stays on track. I'm hoping and praying that everything is fine beyond the feet. His major organs look good, there's no cleft lip, spine is intact and he's growing. A little bit small percentage-wise, but I'm very tiny, too, so he may just take after mom!

What do you see a pulmonologist for? I've had asthma for as long as I can remember so I see him every three months or so for monitoring.

Liz
The cleaning and scrubbing will wait till tomorrow, For children grow up, as I've learned to my sorrow. So quiet down, cobwebs. Dust go to sleep. I'm rocking my baby and babies don't keep.

:hb: Mommy to my three boys!!! :hb:

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Postby motherofthree » Sun Aug 13, 2006 9:39 am

Mlynn, what a precious story. You are amazing. I am so happy for you that you are gaining so much knowledge about your precious son now. It feels like you already know so much and have such a bond with your unborn child. Your truely amazing. I have a brother who has mental retardation, he was born with a cleft lip and palate and had multiple surgerys after birth, but did fine. He is so precious. And although it was a challenge for my parents when we were growing up, she had a great deal of support and still does to this day. He is 37 now and lives in a group home for mentally challenged adults and has 24 hour nursing care and is doing absolutely wonderful. I wish such luck with P.J.

Also I worked with special needs children when I was in grade school and high school, and the DS children are so loving. They were my absolute favorite. They love people and love life.

Good luck to you and all the other mothers. Your baby is so precious.

Jennifer
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Postby mamalynn » Sun Aug 13, 2006 3:40 pm

lizzen- i'm glad to hear that it is an isolated defect. you are right, if something else were wrong they probably would have insisted you have an amnio. i am seeing the pulmonologist for asthma. although it has been much better during preganacy, i still have really bad flare-ups.

motherofthree- welcome and congrats on your third pregnancy! i am happy that your brother is doing so well. i look forward to getting to know you.
michelle 41, dh 44,
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Postby bremaura » Mon Aug 14, 2006 10:54 am

Hello ladies.

Well, I'm on the other side of things. My pregnancy was relatively uneventful and DD looked to be perfectly normal. We didn't realize there was a problem until she was around 6 months old. She has been diagnosed with hypotonia (low muscle tone), global developmental delays, and strabismus (so she wears glasses).

Much like the club feet the hypotonia is often associated with other syndroms (some very frightening). We have had her run through an amazing number of tests and lab work. All of her results have come back normal.

At almost 3 years old she doesn't crawl, stand, or walk. She only has a few words (my favorite is Mama!) and we honestly don't know where she is cognitively. Right now her over all level of functioning is around 9-12 months.

I have found an incredible amount of support through the county and the school district. Please feel free to ask any questions that I might be able to help with.

Having a child that isn't "perfect" in the eyes of the world can have its rough days -- but there is absolutely NOTHING better than holding your little one in your arms -- and they will be amazingly perfect to you.

mlynn - we've already shared a little. I didn't know about the heart defect, I imagine that the surgery is a frightening thing to wait for!

liz - I hope that the clubfeet is all that your little one has. It's relatively easy to correct!
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Postby mamalynn » Mon Aug 14, 2006 11:33 am

oh bremaura, i'm so happy you have joined us! i love the new pic of your dd. are you still ttc or taking a break? my precious p.j. seems to be doing just fine, he is so active. it is me that is having a hard time. i had no idea i would be so sore all the time. i can barely walk somedays, but i believe it is all worth it!
michelle 41, dh 44,
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Postby lex » Mon Aug 14, 2006 1:43 pm

Hi Guys,

Mlynn thanks for requesting this board, and I admire your strength along with the other beautiful ladies here. I have sickle cell disease, and my DH has the trait. Many people are not familiar with this disease and we also haven't got enough medical research attention. Its basically a blood disorder, that cause pain in the joints if not hydrated or medicated, the red blood cells turns from round to sickled shape that makes it hard to go through the blood vessels, if not treated it can lead to death. At our 17 weeks check up at the peri. everything us perfect with the baby, but the only way for us the know if the baby has this disease I would have to have an amnio which both me and my DH agree not to have. Even though the baby has a 50/50 percent change of having the disease or the trait we are O.K with it. The baby was a gift from God and we worked very hard for her, LOL. People say I'm crazy for bringing a child that have of chance of being sick, but who are they to judge me. I've live 23 years with some rough days but I live through it by having faith, and I'm gonna see through it that my daughter does too.
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Postby mamalynn » Mon Aug 14, 2006 7:31 pm

hello lex and welcome. thank you for sharing your story. it sounds as though you know exactly what to expect. your strength and love for this baby shines through and will carry you during the difficult times. i hope your baby is healthy and happy. i wish you the best!
michelle 41, dh 44,
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Postby bremaura » Tue Aug 15, 2006 8:50 am

mlynn - I'm still TTC but trying to keep my ttc-self and my mom self seperate on these boards. :wink: I remember towards the end of my pregnancy it felt like I was lugging around someone elses body -- it gets exhausting. Take extra care of yourself!!

lex - I completely understand not having the amnio. It wouldn't make a difference as far as wether you would have your DD or not! My own mother said something to me the other day about how it was too bad that DH and I couldn't have another kid considering DD. WHAT? Obviously she doesn't know that we are TTC. She just assumed I wouldn't want another one. I'd take another one exactly like DD.

anyway. Grr on the people who don't understand how you can love your child just as much, if not more, because they are special. Okay, done ranting :oops:
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Postby mamalynn » Tue Aug 15, 2006 6:33 pm

bremaura- shame on your mom for making an assumption like that. i would love to have another child. i couldn't bare the thought that pj would miss out on a brother or sister just because of his disability.
michelle 41, dh 44,
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