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Intro

pinotgirlpinotgirl member
in Special Needs

Hi! My son was born in mid April. After my 16-week bloodwork, it came back with a fairly high risk for Down's, so I did the amnio in spite of being really against any invasive testing. He did not have Down's.

He was behind his gestational age from the start, He had asymmetrical IUGR, so I was in the hospital on bedrest for a month starting at 24 weeks and spent another month at home on bedrest (I fought to get out of the hospital as those 4 walls were making me crazy!). Things took a turn for the worse at 32 weeks and he was delivered via c-section due to his size (2 pounds 4 ounces). 

He was born without a left thumb (it was actually originally there, but only attached by a vein and some skin... only the top part of the thumb had any bone, and little at that). He was also missing 3 ribs on his left side. In the NICU after about 4 weeks, the thumb took a turn for the worse and they had to remove it. We were told there wouldn't have been anything they could have done for it anyway, but we at least wanted to see what our options were before just getting rid of it.

We had genetic testing done on him and it turns out he has a microdeletion on Chromosome 8. We are going to be tested as well in case we decide to have another baby.

Most of the time, I'm pretty positive about his situation. Everyone always asks us if we knew about the thumb/ribs from the ultrasounds, but no one ever told us if they saw anything like that. I do have times that I just feel sorry for him. I'm worried kids will pick on him for not having a thumb (we haven't decided if we're going to have surgery done on his hand yet to move the index finger into the thumb position... but I fear that might make his hand look even more deformed... right now thankfully most people don't notice it). He does slump over on his left side too due to the missing ribs, but he will soon be going to physical therapy for that and possibly surgery at CHOP (we're still looking into that).

Can anyone relate and/or offer any advice? 

Sorry if this was too long. I tried to be brief but failed miserably  ;-) 

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Re: Intro

  • st.augbridest.augbride member
    I just want to send you hugs and let you know that you will find tons of support here. Another board that is also great if you haven't found it yet is the Delayed Darlings board on babycenter. We started off also measuring high-risk for down syndrome from the blood work and had an amnio that was clear, and went on to develop severe IUGR. Ds was born at 34w5d at 3lb 3oz. For us though, it seems it was placental and on my end that caused his issues. That of course never stopped the doctors from running us through every genetic, neurological, and every other kind of test since his birth. The only birth defect he had which was related to the IUGR was hypospadias, which he needed two surgeries for, though hopefully it's corrected for good now (hard to know until he's potty training). Anyhow, I can at least relate to much of the stress of it all and hope things get easier for you guys as time goes on. I know as we got further away from the medical stuff and surgeries, and more into the therapies (we do PT, ST, feeding and ABA), I've felt much less stressed and better about everything. Time passing does seem to help.
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  • pinotgirlpinotgirl member

    Thanks for the babycenter rec! I'm on there too, but haven't seen that board. Will definitely check it out!

    DS also has hypospadia... we're looking at surgery in about 3 months for that as well. He had hernias too (groin and umbilical)... he already had the surgery on the groin one, butt he umbilical the doctors are pretty sure will heal on it's own. 

    It is a lot. Like all of you, I never expected all of this when I finally got pregnant! 

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  • st.augbridest.augbride member
    Ds had the umbilical hernia too, but it went away on it's own eventually. He had his first hypospadias surgery at 7 months and developed a fistula shortly after (very frustrating, but it happens). So he needed a second repair at a little over a year. The Delayed Darlings board is controlled so you need to send a request to join and then they will accept you. It's a very active board with a wealth of knowledge and information!
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  • grbnikgrbnik
    Just wanted to say hello also- and my DS had groin (hydroceals) and umbilical hernias also!  He outgrew them by 12 months, but they were thinking that he may have needed surgery if they didn't go down.  Good luck with all- your LO sounds like a sweetie!
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  • pinotgirlpinotgirl member

    imagest.augbride:
    Ds had the umbilical hernia too, but it went away on it's own eventually. He had his first hypospadias surgery at 7 months and developed a fistula shortly after (very frustrating, but it happens). So he needed a second repair at a little over a year. The Delayed Darlings board is controlled so you need to send a request to join and then they will accept you. It's a very active board with a wealth of knowledge and information!

    I sent a request already... will hopefully get accepted soon! :) 

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