Thursday, July 9, 2009

Soul Mates

So when I was thinking about what to title this blog, I thought of all of the other Spina Bifida parents that I have been learning from. We are a sort of Soul Mate. Each mother that I have connected with over the phone long distances or through Spina Bifida Clinic share our deep concern and love for our children. I know that most people love their children, but the emotions that we parents go through seem to connect us on such a deep level.
Through my blog, I recently got an e-mail from Shelly ( in Houston. She found our blog from searching the internet on Spina Bifida.

By making our blog public it was our hope and intention that we could be a resource and a personal connection to someone else as the Etchells ( family has been to us along with the many other families on the SB links on the side of the blog.

Shelly had just learned of her daughter’s diagnosis and all the scary things that go along with it. I called her and I felt such a connection with her and the whirlwind of things that she and her family were going to be going through.

Today I learned that she is going to SF for the MOMs study (in utero surgery) this Sunday ( If they decide to go through with it, they could have surgery this Thursday. The preparation that they are having to make for the possibility that Shelly may not be with her kids for the following 3 months after the surgery is a BIG step in its self.

This brought back so many emotions for me. We documented our few extraordinary days while we were in SF for the MOMs study in October and November. The decision to be a part of a national study on the effects and benefits of a risky in utero fetal surgery at 25 weeks is such a enormous decision. We fasted and prayed and got as much information as was possible through a litany of exams and meetings with Doctors in many specialty areas. Ultimately we were disqualified which was an answer to our fasting and prayers as neither of us could totally come to an agreed upon decision.

The in utero surgery is very risky but it is thought that it may 1) reduce the chances of needing a shunt in the brain and 2) protect nerve endings on the spine from further damage.

In addition. I am posting this short story and photo of an operation done at Vanderbilt.
The picture is that of a 21-week-old unborn baby named Samuel Alexander Armas, who is being operated on by surgeon named Joseph Bruner.The baby was diagnosed with spina bifida and would not survive if removed from his mother's womb. Little Samuel's mother, Julie Armas, is an obstetrics nurse in Atlanta . She knew of Dr. Bruner's remarkable surgical procedure. Practicing at Vanderbilt Univ Med Ctr in Nashville , he performs these special operations while the baby is still in the womb.During the procedure, the doctor removes the uterus via C-section and makes a small incision to operate on the baby. As Dr. Bruner completed the surgery on Samuel, the little guy reached his tiny, but fully developedhand through the incision and firmly grasped the surgeon's finger. Dr Bruner was reported as saying that when his finger was grasped, it was the most emotional moment of his life, and that for an instant during the procedure he was just frozen, totally immobile. The photograph captures this amazing event with perfect clarity. The editors titled the picture, 'Hand of Hope.' The text explaining the picture begins, 'The tiny hand of 21-week-old fetus Samuel Alexander Armas emerges from the mother's uterus to grasp the finger of Dr. Joseph Bruner as if thanking the doctor for the gift of life.' Little Samuel's mother said they 'wept for days' when they saw the picture. She said, 'The photo reminds us pregnancy isn't about disability or an illness, it's about a little person.' Now see the actual picture - and it is awesome... incredible... and hey, pass it on. The world needs to see this one! Don't tell me our God isn't an awesome God!!!


Shelly Burr said...

Awww, Adrienne, thank you so much for your blog post! I am near tears because I feel so blessed to have found you and know that we can help each other through this journey. You may have seen on our blog today that we randomized to the prenatal surgery. I check into the hospital tonight, and have the operation tomorrow. Everyone here in San Francisco wanted to say hi to you and were so glad that I had found you to talk to about it all. You are an amazing woman, and I only hope that we can get through this with as much strength and courage as your family. Lots and lots of love!

Mark and Tara Christiansen said...

What an amazing beautiful post. It has been a gift to our family to follow your's and Hayden's journey. I can't help, but feel the Savior's love for little ones when I read all that you have to share.