Tuesday, January 26, 2010

A new addition



Forgive me if I've been totally MIA when it comes to my blogging duties lately. I have pregnancy brain.

Yes, Hope will officially become a big sister this spring (note the big smile on her face above; she has no idea what's ahead). I'm five months along now and due in early June, though I'll likely have a C-section in mid-May because of two previous ones.

Now, some of you may be wondering why two people with a known genetic condition in the family would even CONSIDER having another child. As incredibly grateful as I am to be Hope's and Will's mom, I've always longed for a healthy child. And shortly after Hope was born, Joel and I learned that the possibility existed that we could -- through science.

Joel and I were able to do some very, very detailed genetic testing at the embryonic level before I even got pregnant. It's called Preimplantation Genetic Diagnosis. Basically, people way smarter than me -- scientists -- can build tests for families with known genetic conditions to test future pregnancies for that same condition. In an amazing coincidence, we went to a facility in our own backyard, Detroit, and a test was built using my DNA, Joel's, Hope's and Will's (which we banked before his death, hoping that we'd one day be able to have an official CdLS diagnosis). Using that test, we were able to test specifically for Cornelia de Lange Syndrome at the embryonic level. PGD, which has been around for about 13 years, is 97 percent accurate.

It's a lot to get your brain around. To do this testing, we had to go through in vitro fertilization. We went through our first round in September and got the amazing news a week later that I was pregnant. In vitro is not an easy process in and off itself. I gained so much empathy for people with fertility issues because it certainly isn't easy. It's physically, emotionally and financially challenging.

But the amazing news is this: About a week after Christmas, I had an amniocentesis. We had to send everything off to a special lab at the University of Chicago which is the only lab in the country (I think) that tests for the NIPBL gene mutation Hope has and Will had, which causes CdLS.

Our baby does NOT have the NIPBL mutation. I just cried when the genetic counselor called me. I had tried to prepare myself for every possibility. But to hear those words, I can't even describe my relief. For a couple days afterward, I jumped every time the phone rang because I kept worrying the genetic counselor was going to call back and say she got it wrong. It's been two weeks now and I don't think she's calling.

I realize that some people may disagree with our decision. Joel and I could've chosen adoption. But adoption has its own challenges and I just hope that those who don't agree with our approach withhold judgment until they've walked in our shoes. Again, I feel SO blessed to be Hope's and Will's mom. And yet, I've always wanted a healthy biological child -- a child who'll hopefully one day learn to read, play soccer and graduate from college.

I realize there are no guarantees. So for now, I just feel thankful. And I'm keeping my fingers crossed that this pregnancy continues uneventfully. All I'd like in the world is a boring pregnancy. Oh yeah -- and a healthy kid!

One last thing: We're having a BOY! As I said before, Hopesy has no idea what's in store for her. I can't wait.

23 comments:

Deb said...

Congratulations! I wish you the very best with all of the adventures that lie ahead.

The Watczaks said...

Congrats! I can't wait to see pictures of Hope with her little brother!

Does this mean no Dallas?

Elena said...

Awesome post Mo! Again, so excited for you guys!

Misty said...

I think that what you've done is WONDERFUL!!! and I am so very very happy for you all! Hope is going to be an awesome big sis :) to her baby brother!
I will miss meeting you guys in person this year in Dallas! BUT I AM VERY HAPPY AT THE REASON WHY :)
many many many cyber hugs to you all!

Kim said...

Fantastic news! We are so happy for you guys! :)

Pam said...

YAY!!!! I've been waiting for the news to hit the blog! so excited for you all, and I can't wait to rub your belly in March!

Love you guys!
xoxoxo

Anonymous said...

I've always admired your forthrightness, and you've done it again! This is a beautiful explanation of how and what and why. It's been a privilege to follow your journey through thick and thin, in person and blogwise. On to the new chapter! Yippee and congratulations!!!

Love from Maine,
Grandma K.

Rhonda said...

Congratulations! I am so happy for all of you. Your post brought tears to my eyes. I know exactly how you feel. I love being Sean's mom and wouldn't trade him for the world but I so wanted to be able to have a "normal" child. I wanted to hear the words "I love you, Mom". Fast forward 14 years and I am so glad I had another baby. While it wasn't easy dealing with a new baby while Sean was going through some of his issues, again, I am grateful for the experience. I wish you all the luck in the world. I will be praying for you all. Can't wait to see Big Sis pictures! Thank you, too, for being so open in your post.

Rhonda

Joel and Maureen said...

Thank you all for the warm comments and support! You guys are awesome!

For all our CdLS friends, no, we won't be able to make the conference in Dallas in June. :( I'm so bummed we won't get the chance to meet some of you who I really consider good friends. I'll be thinking of you guys & we'll have to meet up in 2012!

Rachelle said...

Congratulations to your family! Hope will make a fantastic big sister! I appreciate you being so candid with your story. We all make decisions based on what we think is best for our lives and our situations. I'm happy for you and that you have good news about your son. I hope things continue to go well and can't wait to see pictures of Hope loving on her new brother!


P.S. We will miss you all in Dallas! I was looking forward to seeing Hope again - will have to settle for blog pics till 2012 I guess! lol

Aunt Molly said...

Love the post, Mo. Can't wait to be an Auntie again!

Love you!

The Hall said...

What wonderful news! You guys have such an inspiring family. Bravo!

beth said...

Ditto to Molly's sentiments. It's exciting to be an Auntie! Woot!

Love you guys.

Jodie said...

Congratulations to you both! Can't wait to keep reading the blog as you balance Hope and the new bundle. I can't wait to hear Joel's comedy routine and Mo's sensibility. Congrats.

Beth said...

Hey Joel and Maureen,
You two are very AMAZING people! As I finish my degree in speech-language pathology, I want to tell you that what you are doing is incredible. I am currently in my 3rd internship working with special needs children, and I love it. That being said, it can be exhausting -- and I get to go home after 8 hours. I admire your dedication, compassion, and positive attitudes. And, I am SO excited to hear the news that you're expecting again. I am so looking forward to reading the blog and hearing about all of your "adventures"!!!!

Anonymous said...

I just want to say Maureen that you deserve every happiness in the world and biological child - or two or more - that are healthy. If it is what you want than you deserve it. You and Joel have amazed me and I am so glad to have been able to see you again at the Walk and see what a wonderful couple and pair of parents you both are. I pray for everything to continue to go well for you and Joel, Hope and her new baby brother :) your strength and grace are inspirational ((HUG))

-Laura Roush

Anonymous said...

Ok so I am at work crying because I am sooooo happy for you guys. I cannot wait to rub your belly too Mo and am so thrilled for everyone. Hopesy and your new baby boy have the best parents ever. See you soon,
Lori

Sue Burzynski Bullard said...

Maureen and Joel: I am so happy for you. I've always said you two make wonderful parents. Another child will be lucky to have you!

Leslie Anna said...

Aww that gave me chills, Im so happy for the both of you! You both deserve the best your great parents! I wish you a happy healthy pregnancy!

Anonymous said...

Hey you two!

I am so excited to hear the news! I totally understand the PGD option. My husband and I have considered it for a while knowing what we know with beck, but the risk of it not working out weighed the cost...I'm so glad it worked for you and can't wait to see pictures of the new arrival! Congratations again and if your ever I Dallas through me a line I would love to show you guys around!

K said...

What great news! Congratulations!

Lisa said...

We're sooo happy for you guys! I realized after Brian got the FB post about the baby that I must have missed this post. Oops! So exciting to read it and I love your explanation about the genetic process. I was just telling Brian that Liz will likely have to make some similar genetic decisions too when she's older (not that we want to think about that now We're so happy for you guys!!

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