Preparing for a special needs baby

[Wombleofwimbledon1984]

Hi there

We have found out our baby has DiGeorges syndrome and after a hellish two weeks have decided to keep the baby. It’s very hard to visualise what problems he will have because the spectrum of the syndrome is so large.

I am 26 weeks pregnant and would really appreciate some sort of advice as to how to get my head round all this. What should I prepare for? What support is out there?

Less so the medical stuff as now we are diagnosed we will be going to a hospital with a big specialist centre. More the emotional - how do I get excited with all this worry? What should I tell people?

Insight from anyone who has been pregnant with a special needs child or has a special needs kid now would be really appreciated xxx

I would like to offer you my congratulations, you're going to have a beautiful baby. I don't have a child with sn, I am expecting, but no reason to think our baby will have special needs. I am a special needs teacher and sibling to three amazing people with special needs.

Maybe research local support groups to you and start looking into educational and care options so that you know what's out there when the time comes. It might be an idea to look into sign language adapted for intellectual disability, as I understand that digeorge often presents with hearing issues. I find with in special classes visual communication is the one of the best tools a child can have. Other parents with the same of a similar diagnosis will be your best source of information and support.

Congratulations! My son has Down syndrome (we found out postnatally as we declined the screening tests). My advice would be to just enjoy your baby, try not to get too caught up in the diagnosis. All new babies need the same things regardless of any diagnosis they may have received (they just need love, cuddles, feeding etc!). I found all the initial medical appointments quite overwhelming but it does all settle down. With regards to what you should tell people, that’s up to you! We were very factual when talking to and telling people about the diagnosis.
If there are any local support groups maybe think about contacting them, would found our local group a great source of information and support especially at the beginning x

Biggest advice would be to find a local support group, and not to be afraid to push for anything you need in terms of services or money. As parents we are always our child's biggest advocate, but as child with SEN sometimes you need to shout a bit louder.

Also try and find out as much information as you can, but don't become hung up on the diagnosis. If your DCs difficulties mean they are developing a bit behind their peers, try not to compare too much (easier said than done) and celebrate when they reach their milestones! It doesn't matter if other babies got there first. Sing loud and proud!!

My brother and girlfriend have a 3 month son who has Down syndrome. She found out she was pregnant at 24 weeks so missed all the relevant screenings but they wouldn’t change him for the world. Like said above, all babies regardless need love and care. They are pretty overwhelmed with all the hospital appointments but that’s expected as they’re new parents to their first baby. They just take every day at a time and whatever the future holds, they will take it in their stride. He is so perfect and we love him unconditionally.
Your son is a miracle and will be just perfect x

Hi,we found out at 33 weeks (about a month ago) that our baby has oesophageal atresia (his oesophagus isn't attached to his stomach) and they think a cleft palate and he also has a small jaw which could be a genetic issue but we won't know till he's born. It was a massive shock! Chromosome tests have come back clear.
I am being admitted to a specialist hospital an hour away from home on Friday and they are hoping to give me a c section on mona day or Tuesday. They want me to have a section so they can make sure all the specialists they need are there at the birth.
He will need surgery within 24-48 hours of his birth and I'm terrified!
I am finding it very hard to get excited as we don't know the extent of the issues until he is here so when he is here,it could be even worse news.
I have a son who is turning 2 this week who is extremely attached to me so I have the worry of leaving him to be at the hospital with his baby brother too. The surgeons have said he could be in hospital for weeks or months,we just don't know.
So I totally understand the fear of the unknown,me and my husband were just saying that we wish we could just fast forward a year or two into the future to get a glimpse of how things will be so we can be prepared!
Sorry that turned into a novel,but just want you to know,I understand and you aren't alone xx

DiGeorge syndrome has so much variety that I think you should wait until after the baby is born and get advice from your pediatrician. Most children just get one or two physical problems while others will have everything and their outlook will be very different to someone with other conditions.

Thank you all very much for your advice.

@Moreteaplease84 I’m sorry you’re going through such a stressful time and totally get wanting to fast forward! The most comforting thing someone’s said to me so far is that at the moment all you know about your baby is the diagnosis. Once you meet him and you see him as a person it will all slot into place. I’ve also heard in a way the most stressful time is now when we’re pregnant. I hope next week goes well for you, post back at some point if you can x

@Wombleofwimbledon1984
That is great advice! I guess I am just concentrating on the diagnosis rather than the fact that he's our little boy. We are lucky in some ways that we have both found out before we have our babies so we can prepare but that also means months of extra worry! I will update you next week. I'm here if you need to talk more in the meantime x

I have a 2 year old daughter with 22q (the more common name now for Digeorge) and we found out shortly after she was born. It has been a real rollercoaster and the first 6 months were very tough. Make sure you allow yourself time to process all the emotions associated with the diagnosis. It’s perfectly normal to feel angry, terrified and sad. I know I did. But honestly the diagnosis is the hardest part. It’s all uphill from there. You’ll really benefit from having an early diagnosis and it will open doors for any therapies you need. Try not to read too much, enough to be informed, but don’t look far ahead. Just focus on any immediate issues and take things as they come.

There is such a wide spectrum with 22q so try not to worry about all the things that could happen. Some of them will, but many of them won’t. We’ve been incredibly lucky with our daughter. Aside from repair of her cleft palate, she’s dodged any medical issues and is rarely ill. We’re lucky to have avoided any cardiac issues. She’s chatting away in sentences and is at average levels for communication. She was a late walker and physiotherapy is her main intervention as she’s behind with gross motor skills but she’ll get there. Gradually the number of appointments with specialists has tailed off as she’s got older. She’s our little superstar and our life is not too different from friends of ours with non-22q kids. Good luck with everything, here to help with anything you need x