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#7345 - 05/06/08 10:50 PM News on TJ and a Question about Loma Linda Hospital
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Ok, This is Cindie Carey (Hamilton) and I'm Karen Sawyers daughter.
well as you know my son was diagnosed via amnio of having Down Syndrome. I just found out a month ago and was waiting to find out if he also had my skin disorder called EHK. he had a %50 chance..

Guess what? He also has EHK. This saturday we go in to find out if he has a heart defect. which is a %40

I fully expect he will have some form of defect that is mild. But because of the EHK diagnoses, I now have to have a C-Section 1 1/2 hr's away. meaning my next child if I have a normal baby will be a VBAC. (I fully intend on trying)

I'm not too down in the dumps about this because even tho I've had 1mo to get used to the D/S diagnoses, I've had my whole life to expect a baby with EHK.. and to tell the truth, I always knew my first would have it. even if I can't tell you how I knew.


By the way, Does anyone in the SoCal area know much about Loma Linda Hospital?

I know it's a teaching hospital, but specifically how they deal with births of EHK babies? That is where I will be delivering.

Thanks,
Cindie
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#7346 - 05/07/08 01:18 AM Re: News on TJ and a Question about Loma Linda Hospital
vicki Offline
Member

Registered: 11/08/07
Posts: 26
Loc: san clemente, ca, usa
I live in socal as well and actually work with loma linda hospital physicias in relation to HIV. I do not know all that much about Loma Linda in relation to EKH, but I did speak with a geneticist there when I found out my son had XLI. He was well informed. That was the only experience I had. I will try and ask around when I get back from maternity leave and see what I can find out. I return to work in June.

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#7347 - 05/07/08 05:24 AM Re: News on TJ and a Question about Loma Linda Hospital
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Vicki~ awesome thank you. Yes, I actually am getting refered over there ASAP. My genetic counsellor is really wanting us to go see them soon. (I can at least talk to them but I don't think I'll make it there more than 2-3X before his birth)

I'm just stressed about all that's gonna be going on with this.
Like as you know Loma Linda is a TEACHING hospital, and I'm gonna make it clear I only want a 4th yr. resident or better operating on me, and then only fully trained nurses and DOCTORS working with him after birth.

I know I'm gonna need to tell them not to try and "scrub" him clean after birth like they do, and to not apply any gauze.. If I have to I may threaten to sue if they don't follow my contingency(sp?) plan..

Of course I know they'll have they're own care plan, but since I know what'll help him more than not when it comes to skin care, I WILL get the doctors dealing with him to sign something stating that they will not do this or that.. etc.

I don't want him rubbed raw after he's born or his umbilical cord getting infected from too much or too little ointment.(since it's supposed to dry out) etc.
Sorry for ranting... Just trying to think of all the details. not to mention my baby shower is gonna be Aug 2 which is about 3 weeks before I'll give birth if they schedule my csection for 38weeks.

Did you have a natural birth?
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#7348 - 05/08/08 03:22 AM Re: News on TJ and a Question about Loma Linda Hospital
vicki Offline
Member

Registered: 11/08/07
Posts: 26
Loc: san clemente, ca, usa
I completely understand you wanting them to follow your agenda. You have done the research and it is your child. Who is your geneticist?

No, I did not having a vaginal delivery. I had to have an emergency c-section 3 1/2 weeks early b/c I ran out of amniotic fluid. My doctors had been giving me non stress test from 32 weeks on b/c they had done research that showed XLI can break down the placenta. I had an awesome team of support. Even though he was early he was super healthy.

I am inspired by your great attitude. You have bee dealt a tough hand and it seems like you are ready for it. I wish you nothing but the best. Like people always say, you are only dealt with what you can handle and God (whoever that is for you) must think your a pretty special person to give you this challenge.

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#7349 - 05/08/08 05:20 PM Re: News on TJ and a Question about Loma Linda Hospital
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
Vicki~ actually I see a geneticist in Riverside called Dr. Herb S Brar.

The genetic counsellor Shelley is the one I like because she takes the time out to talk.
And once I hit 29weeks they're gonna be seeing me 2X a week for the nonstress tests also. I think because sometimes babies with D/S can suffer IUGR.

How does XLI affect a baby? During/after birth?

And are they calloidion(sp?)?

Cindie
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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