New Baby (Charlotte, NC)

[4Jacob]

My sister just had a little boy (Jacob Ryan) a couple of days ago (March 11). We have been aware of his possible defects throughout her pregnancy, but now it is confirmed.

I am not sure if he has micro or anophthalmia, but both of his eyes are shut and sunken. We are pretty sure he is blind, but it is so early, and we are focusing on his other problems.

He has several heart defects, cleft lip and pallet. He also has dandy walker (defect in the brain). We were surprized to see that one of his ears is not fully developed.

My worst fear is that not only is he blind, but also deaf... with the possiblity of mental disabilities.

I am not sure what I need to ask, perhaps I am just looking for support from others who are facing similar situations. Everything is so fresh, and I am feeling so overwhelmed.

Thank you.

[jodi]

First, I want to congratulate your sister on her new son Jacob Ryan. I understand it is a very trying time, most folks posting here are parents so we can relate. My name is Jodi, I'm the VP of ican, and the mother to Wyatt, my youngest son who has SOX2 Anophthalmia Syndrome. Wyatt was born without both eyes and he also has a VP shunt. If you or your sister would like to call ican's 800 number and leave your telephone number, I'd be glad to contact you directly and offer support. ican's number is 800-580-4226 (listed on this site)
Take Care,
Jodi

[Sheila]

I would also like to congratulate your sister on the birth of her new baby, Jacob Ryan.
It is very natural for you and your family, and especially your sister, to feel overwhelmed right now. Everything is new and fresh.
I would just like you to know that there are other families out there, and that we are here for you and your sister if you need support.
My name is Sheila, and my daughter has bilateral anophthalmia (missing both eyes) and she also has a seizure disorder.
I am also the moderator on a private message board on Yahoo for family of children with bilateral anophthalmia or bilateral microphthalmia who are totally blind.
Many of the children on the yahoo group also have other disabilities along with having not eyes (including clefts lips and physical differences)
If you or your sister would like to join this private message board, please send me an email at ludeluh@yahoo.com

Hang in there, and try to stay strong for your sister and your nephew. The beginning is the hardest, but it will get easier.

[4Him]

Hi there,
I am glad you came to this site. There is a wealth of knowledge here. I am currently carrying twin boys and one has several defects that we know about. He has a cleft lip and palate, an encephalocele (a sac at the top of his head where his skull didn't completely form), and either anopthalmia or micro on the right eye. I am due for a scheduled C Section in 2.5 weeks on 4/2 if I can make it that long. We live near Columbia, SC so not far from Charlotte at all. I just want to say if you or your sister need to talk to someone who is currently facing this I am here.
About your nephew's medical care. What I have learned so far is to stay on top of the eye issues. He will need a pediatric opthamologist to get started, then an occularist to place conformers at some point soon to promote bone growth in the face, and then prosthetic eyes--so an occuloplastic surgeon will be needed to at some point. Another poster said there is a great occularist in Atlanta--Dr. Tal Cox. This poster did not have a good experience with the lady that travels to Charlotte--there are not many occularists around. From what I have learned about the cleft lip--it is usually repaired around 3 months of age and the palate around 10-12 months of age. Of course he will need a good pediatric cardiolgist too. I know it is overwhelming--I am living it too just in a little different manner. AND we dont' know what all we are facing yet b/c the babies aren't born yet.
Please know you are not alone. And let your sister know she is not alone either. We are here to listen and help in any way possible.
Every baby is a miracle. Every baby. This little guy needs love just like the rest. Enjoy him!
Take care,
Kim

[4Jacob]

Thank you for all the support already.

Jacob had heart surgery yesterday and is in recovery. Overall they are happy with the results so far. There is an issue of an irregular heartbeat which they will monitor over the next 10 days. If it doesn't resolve itself, he may need a pacemaker.

I have been reading a lot of posts from this group and the one on yahoo (Sheila, thanks for the invitation). Jodi, I also plan to call soon... been catching up on work, so my time is tight this week.

I have already learned so much. I plan to pass all this on to my sister (Jessica) and brother-in-law (Chris) when they are able to take it in. I also want to pass on the recommendations... would hate for them to run into bad specialists in addition to all this.

Thanks again, and I will keep in touch.
Jenna