Health Issues In Sept. 09 Babies

Tara - posted on 03/24/2011

My son Mason was born 9/23/09. While I was pregnant we were told he had a cyst on his brain called Dandy-Walker Variant. When he was born there were a few other symptoms (heart murmur (PDA), hypospadias (urinary opening at the tip), low muscle tone and other small things). At first I was told these symptoms were just random occurences but I didn't think so. I switched Pediatricians and he suspected Opitz G/BBB Syndrome, which was later confirmed with genetic testing. Luckily the heart murmur resolved itself, and he has undergone the first stage of hyspadias surgery. He has been behind with gross motor skills and still is not quite walking yet but pulls up and can walk while I hold his hands. He is talking, happy and healthy. Many with Dandy-Walker Variant and Opitz Syndrome do very well, so we are hopeful he will have a "normal" life. He has suffered about four bouts of croup however which may be worsened by the fact that he has tracheomalacia (weakness in the walls of the trachea).

I am just greatful that he is doing this well. I don't really worry anymore that he is a little behind...he is making great progess and will get there on his schedule.

Ericka - posted on 03/24/2011

I had my son 9/13/09. The only problem he had was a tongue tie issue that we didn't know about until our FIL told us it runs in their family. He could not eat anything with chucks in it or thick textures. I had dentist, therapist and doctors telling me its not that bad and he would out grow it or the surgeon said if we end up doing the surgery, it will not fix the gagging problems. Well mother knows best. Despite what everyone said, we did the surgery and he is eating like a pro. The other delays we are having with Chris is, he hasn't walk up until now, he is 18 months. He does not self feed him self which drives me nuts. He babbles say mama, daddy, bye bye, nana, yeah, but I think those are the only words he does. He doesn't wave bye bye or point to objects. We have him enrolled in EIC and they are helping him improve with his delays. Prayers goes out to others with health issues so sorry to hear whats going on :/

Kristie - posted on 02/08/2011

Megan's genetic tests results have come back and the doc wants to talk. Go tommorrow at 11 to docs office to talk. Will keep you updated.

Lisa - posted on 02/08/2011

Has she underwent an MRI? The reason I ask is that sometimes babies have mini strokes when they are born that are virtually undetected until later in life when their physical development has become more difficult in evolving. An MRI can actually detect if a child had a stroke when they were younger. A lot of kids actually have them, but are so resilient that the parents and doctors may never even notice. I would check with a neurologist and see if that might be a possibility. If so, occupational therapy at any early age can be a godsend. Here's to wishing you the best of luck!

Jhoana Marie - posted on 02/08/2011

im goin to pray for you and your baby :)

Stacy - posted on 02/05/2011

God bless you all! My daughter was born 9-25-09 and has not had anything major thus far. She did have recurring ear infections and sinus problems but since having her adenoids removed and tubes placed in her ears in December, she had knock on wood been healthy. I get nervous too though. My oldest is 12 yrs old now but at 9 months was talking circles around my little one. I could leave words out of a story and she would fill them in! My little one has the attention span of a....well...a lack of an attention span I should say, I think it's relative to all the ear problems on the delay of her speech though. I mean she says mama, dada, nana, papa, Baba but nothing like my oldest could say! Also, everyone tells me she's such a "peanut". She is little but I'm only 5 foot and dad is only about 5'6". I'm concerned only because my fiance was born without a thyroid, hence his lack of height and build. We went through MFM testing and ultrasound when I was preg but everything looked good. She was born at 6lb15oz and 19 inches....quite the little one compared to my oldest who was 8lb2oz and 21 inches but the 2 have different dads. I dunno, time will tell I guess. Best wishes to you all and god bless your perfect little miracles too!

Kristie - posted on 02/05/2011

Just thought I would update a little. Megan is getting fit for braces this month and we should also get the genetic test results back on the 17 of this month. We did get one blood test back and it was some mixed news. Megan's acid levels in her blood are still elevated in the serious level but not bad enough to require starting dialylsis (think I misspelled that). So I will update with more news when I know more.

Michelle - posted on 02/05/2011

I had my little girl 9-15-09 and she has had a few health problems like allergies and rsv 3 times, but as far as milestones go she is very smart and picks up on everything very quickly. I wish everyone the best and know God has a special plan for all of you.

Jessica - posted on 02/02/2011

my son has autism. he had major health problems when he was a baby and almost died once at birth and once at six months old. he didn't walk until he was 18 months old and did not crawl until he turned one. he rolled over at 10 1/2 months old. i feel for you. what helped me was to realize that no matter what happens, they are still the person you fell in love with and no diagnosis changes that... i feel for you and i wish you nothing but the best.



a poem i read that was very helpful to me when my son was diagnosed with autism, but it can work for your situation too.



Welcome to Holland



I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…





When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.





After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."





"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.





But there's been a change in the flight plan. They've landed in Holland and there you must stay.





The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.





So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.





It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.





But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."





The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.





But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.



Written by Emily Perl Kingsley

Ashley - posted on 02/01/2011

Wow! Sounds like you have a lot on your plate...keep us updated when you find out! My son is having surgery on Friday to have tubes put in his ears because he started talking and has regressed. I pray it is his ears and not something else like Autism that has made him stop talking...

Melinda - posted on 01/31/2011

My cousin's son was born in July 2009 and had similar issues. My daughter was born in September 2009 and crawled by 6 months and was walking by 10 months. She was comparing her son to my daughter. Her pediatrician got her son into a program for both Occupational therapy and physical therapy and within 1 1/2 months he went from crawling to pulling up to taking his first steps. That was 4 months ago. Today, you would never know that there was any issue. He keeps up with his 4 year old sister. She had to keep pushing her pediatrician until they would finally listen, so maybe you should do the same.

TIFFANY - posted on 01/31/2011

My daughter is 16 months and has mild spastic cerebral pasly

Rebekah - posted on 01/30/2011

Although I'm not happy about other peoples problems, I'm glad to see I'm not the only one that worries about milestones with their children. My daughter couldn't sit up by herself until 8 or 9 months old... it totally freaked me out. And then she didn't actually CRAWL until the day after she turned 1! It was so frustrating because all my friends kids were WALKING at 1 and mine was only starting to CRAWL. And now she is 16 months old and doesn't walk. It frustrates me a little bit, but I read somewhere that if they are late with one milestone, they will pretty much be late with all of them. Also, my daughter doesn't talk at all yet. She babbles a lot, and says a few little things like "please" (which sounds like "eeease"), she says "mama mama mama" when she WANTS to, but not consistantly at all. She doesn't say daddy. And all my friends kids can say things no problem at all. So I understand your worries. Although, I think every child is different. I really do! I mean, Einstein didn't speak at all until he was 4 years old!! They must have thought he was a real idiot or somethingl. lol! So I'm just trying to trust in God and enjoy my little girl for who she is.

Angie - posted on 01/29/2011

Hi! My girlie was born 09/24/09. She too insists on scooting on her bottom instead of walking. With her, she could sit up at 6mos, but wouldn't. Around 7mos she decided she would sit up. Even now, she can walk, but chooses not to. She can stand herself up and balance well, I guess she just doesn't want to walk. She also had tummy problems, you could hear her tummy churn, she would spit up a lot and cry. She hated tummy time and being on her back, she slept in a swing until she was 4mos old. I too changed doctors early but was told the same thing - she is growing and developing right on track, so keep doing what you're doing. I would say the first seven months were hard (at least to me) but she is such a cuddly sweetie. I know she'll be fine. She just does things when she's ready to.

The only thing you can really do is love them - a lot of the other is out of your hands.

Sheri - posted on 01/29/2011

I wish you the best ever for Meg and all the other babies here! They sure are our precious angels:) This is my third baby at 40. My other two are 17 and 12. This baby has been an unexpected surprise and all my children have taught me such patience over the years and I kind of get a do-over with Brady:) my best to all!

Noreen - posted on 01/28/2011

The only health issues we have for my daughter is these darn food allergies. So far, we have found that she is allergic to milk, eggs, blueberries, and now kiwi. Possibly even peanuts. She went into anpheltetic (sp) shock a few wks ago from getting into her brother's candy that had peanuts in it. We had to use her epi pen :(

Kristie - posted on 01/28/2011

Thanks everyone for the encouraging words. I was having a rough night the night I posted this conversation. My Meg had just spent the day at the local childrens hospital have genetic blood testing done and being fitted for leg braces. She screamed all day and my heart was just breaking for her and in seeing it. I guess braces are a good thing now because that means they are thinking about her eventually walking. They at first was saying she'd never walk now she is getting braces so there is hope. I think I was reaching the point of being overwelmed. She is my perfect beautiful little girl. She's a character and a joy to have around and I would never trade her for anything. Meg is a brave baby and teaches me patience and real unconditional loves everyday. If you can just keep her in your thoughts She gets the results of her genetic testing back next month and we are hoping the docs are wrong in their ideas or thoughts about what they think is wrong because it is not something I would want to think about or deal with. Thanks for your stories about your precious angels. It helps me realise that we are not alone. Other have health problems as well and they deal with them and get better so Megan can to.

Sheri - posted on 01/28/2011

OMG reading all these health issues is heart-breaking! I really empathize with you! Brady was taken by c-section 2 weeks early and spent a week in the NICU for Benign Neonatal Myoclonis which are benign seizures. His was an extreme case. When we would walk in the NICU Brady's whole incubator would be rocking and moving. He grew out of that condition than god by about 5 months.He has been a little slower than my other two kids with his milestones and still does not speak at all. He babbles a few sounds like mama ama baba but JUST started saying dada 2 weeks ago and you can see how difficult the sound is for him. He hasn't said it as a matter of fact for a number of days now. I'm a little concerned but babies will talk when they're ready. My daughter was saying everything by 17 months. My other son had his own language...lol Brady has a lazy eye as well and we're FINALLY going to see a specialist in June. We've been asking our family Dr for a referral since he was 6 months old and still we wait...It's really bad some days, better others. I think we do really have to sit down and just enjoy every single day we have with them. They're babies for such a short time and dealing with all the stress of illness etc takes away from enjoying them:) good luck to everyone!

Sherry - posted on 01/28/2011

Not like you described, but my son, Kenny, had severe bilateral congenital cataracts and went blind shortly after he was born. It took 5 eye surgeries to get his vision back but he is legally blind and has glaucoma really bad, and could end up losing his vision, despite all the surgeries and fighting daily to get all the drops in his eyes. It is very stressful and has taken a toll on all of us. His Dad is recovering from a stroke and I had to go on anti-anxiety medicine. Just do the best you can with coping. I hope you can find support from others. Just know you're not alone. Many babies have health problems and it's very difficult on the whole family.
www.caringbridge.org/visit/babykenny

Jenn - posted on 01/28/2011

my daughter Zoey was born 9/11/09 via c-section and the only 2 problems we had with her were breathing problems due to a) being a c-section baby b) smaller than normal nasal passage. The other issue we had was her stomach. She couldn't keep food down. Eventually she grew out of it, but even now she still has some problems breathing in her sleep. The only advice I can give you is to just enjoy her. She is your greatest gift. Don't give up on her or yourself. I remember having to force myself to leave her with a friend for a day because i was too overwhelmed. It happens and its good for both of you. I used to think that researching everything about a problem she had would make things better...it doesn't. It makes you feel worse. Go day by day. If you need a break take one. Try a hobby at night when she goes to bed. I picked up crocheting and I've been less stressed. Just know she is perfect the way she is. And if she is happy with her days then that's all that matters. I really hope everything works out well for both of you!

Kristie - posted on 01/25/2011

Megan does do physical and occupational therapy at home once a week for both at home through early intervention and both ot and pt at the local Childrens hospital in St. Louis twice a week as well. She sees a neurologist and a genetic doc along with her ped. They have only giving us a diagnosis of hypotonia thus far. (poor muscle tone) They have some ideas that it could be caused possible from some sort of metabolic disorder. We have to wait for 6 weeks for results. The wait is killing me. Thanks for responding.

Kellie - posted on 01/25/2011

Hi Kristie,
My son has had minor issues his whole life...nothing that I can complain about but here's what we've been dealing with. At 4 months the doctor referred us to an opthamoligist for different size pupils. The pupils ended up being nothing but we found out he has bad eye sight because of it. He's had glasses for a week now (after a year follow up.) At 5 month we had to go to a neurologist for his flat head but didn't end up going with the helmet and his head has rounded out a bit. It's still pretty flat though. At 6 months we went to the urologist for two urethras and his skin re-attached to his penis after being circumcised. We're actually going for the year follow up tomorrow to check on the extra urethra. He might have to have a procedure done to fix it. We're also dealing with developmental delays. He isn't speaking yet. We have early intervention coming into our house starting next week to evaluate his development. He will and can walk but chooses most of the time to crawl. He's always been a little behind in his milestones so I"m not too worried about the not talking since some kids don't even talk until 2 but I want to take every opportunity possible to get help. I want to learn how to teach him and I think they could give me some good pointers. Did your pedi recommend early intervention? Or do you have a program around like that?