Special Needs

Any T21 moms out there?

Hi ladies! Just looking for some advice on what to expect through a Down syndrome pg. I'm 17w5d with our second baby, a little boy. The MFM doctor hasn't seen any abnormalities on US so far, but what can we expect to be looking for later on? Thanks ladies!
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Re: Any T21 moms out there?

  • I saw you posted on High Needs and followed you over here. I am pregnant with a DS little boy too. I am 27 weeks. We found out via amnio after diagnosis of a major congenital heart defect. The only abnormal readings we get are the head is very slightly on the large end, and the femurs are slightly short. No other abnormalities seen. I am told I will be swarmed with doctors after delivery to check all sorts of things with the baby, but there isn't much else to do during pregnancy.

    I also have polyhydramnios (excessive fluid), which is most likely related to problems with the GI tract. Again, nothing that can be done before birth, but they will check as soon as he is born.

    Good luck to you. It's incredibly stressful. If you need anyone to talk to, I understand what you are feeling right now. 
  • We got a prenatal diagnosis at 13 weeks from a positive MaterniT21 test.  We opted not to do the amnio.

    Ds2 was born at 36w4d on Friday March 8, 2013 at a little after 2pm.  He spent 0 time in the NICU and other than having a quick echo done after delivery we only saw the pediatrician that cares for the newborns at the hospital.  We were discharged from the hospital on Sunday March 10 in the middle of a blizzard with a baby unable to nurse, no breastpump, manual or electric, and no means of feeding him -- just instructions to pump after every feeding and to feed 10ml of either colostrum or formula by syringe after every feeding.

    My husband picked up a double electric breast pump from insurance on Monday afternoon. 

    He had a follow up appt with a pediatrician on Tuesday morning.  They checked his bilirubin counts.  The bilirubin counts were high enough that they sent home healthcare to start light therapy.  The home health care nurse was unable to start the therapy because his body temp had to be higher than 97 degrees and ds's body temp was 95 something and nothing we were doing was raising his body temp very fast (took over 3 hours to get to 97.0) he would not respond to anything and would not eat.  He was re-admitted to the hospital and put on tube feedings and under the lights in a heated isolette.  His jaundice was resolved after a day or two but he was not discharged for almost a week because the pediatrician wanted us to be able to feed him without the tube before discharging him again.

    I do not know how in all of this we were overlooked and the genetics people who usually are called in upon the birth of a child with down syndrome never were called/notified but ds was 8 months old when his pediatrician referred us to them to answer questions he could not....right now we are waiting for insurance determination as to the coverage of testing to confirm the MaterniT21 screening results.  Once that has been determined, we will finally have the appointment with genetics that we SHOULD have had 9 months ago.

    With what I know now, I would have found out who he should have received visits from immediately following birth so I could check off to make sure none were missed.  I also would have questioned his discharge prior to those visits (not to mention the other details related to feeding)

    Prior to birth, I was seen by MFM only due to age, history of m/c and preterm deliveries, GD, and the ds.  Other than the fetal echo, I'm not sure which diagnosis triggered the frequent ultrasounds, but other than that, the management of his pregnancy was not that different from those of my first two children.  I got in contact with my local ds support group within hours of receiving the test results and the members of our local group were very helpful with understanding where we were and what we were dealing with and with answering questions -- in fact they are the ones that got me asking the questions that the pedi couldn't answer......

    Fortunately, my ds didn't have heart or bowel issues though he does have MSPI and reactions to apples and pears that I don't know if they are food allergies or not yet, but he does have FTT and reflux.

     

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  • Hello. My dd is 7! Pretty normal pregnancy and delivery. After delivery she spent 10 days in the nicu for jaundice and not keeping her oxygen stats up. Breast feeding was a challenge. She wasn't eating enough to gain weight. Only maintain. Dr said breast feeding was too taxing on her so I started pumping. We had open heart surgery at 6mo to repair a VSD. She was in the hospital for 3 days. She has tonsils out last year and our current issue is learning to sleep with the cpap. She has sleep apnea. I suspect she's had it all along but des wanted to wait before putting her on the cpap. For the most part she is happy and healthy. Rarely gets sick. Her cognition is pretty high but her speech is terribly behind. I think being proactive is the best. For my dd it just takes her longer to grasp a concept. She may have started something on track with her peers but would take longer to master. Starting early helps. Encourage activities in areas they are likely to struggle so that maybe they stay with their peers a little longer.

    The best advice I got was from the pediatrician. You baby will grow and develop just like any other kid. They will learn like you other kids at home. What you emphsize at home will have the greatest effect on your child. Ie if you push academics at home then your children will excel in academics. Downs or no downs. Best of luck.
  • My DS turns 4 in November. It has been quite an amazing ride...most of all, our life is so much more "normal" than most people would imagine. We started therapies at 6 weeks old. We also did private therapies, as well. The best "advice" I can give is: Be proactive! Don't put limitations on your child. Find a local group with other T21 moms. Educate yourself!! Your DS will do everything typical children do. However, it will be at his own pace. Certain milestones might take longer to grasp and others will come easily. Low muscle tone(hypotonia) is our biggest struggle. My DS knows all of his letters and numbers: 1-20, shapes and colors...but he might have an unfair advantage because I was a Kindergarten teacher before becoming a SAHM;-) I would encourage flash cards, too! We started flash cards at 6 months. Implement everything from therapies at home, as well. Definitely join the Down syndrome and Down syndrome pregnancy group on Babycenter.com. You will find immense support over there. Best of luck to you.
    www.lovingouraustin.com
  • Thank you so much ladies! Things are getting so much easier to understand and come to terms with. I appreciate all of your insight and wisdom. :)
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