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Monday, November 10, 2008

From the Beginning

I started this blog in hopes to help other mothers who may be going through the same thing and for my family and friends who may want to follow our story. I have yet to face the hard part of dealing with everything first hand as I am still pregnant. But I figured posting about our journey with hydrocephalus I may be able to provide some reassurance or help to other mothers going through this as well. I have found many of the blogs helpful and would like to contribute what I can to others.

Me and my fiance (Michael) went in to my perinatal doctor to find out what we would be having. During the sonogram the doctor took all the measurements without saying much. He ended the sonogram and told us the bad news first then the good news. Well the good news was that we were having a little girl!! The bad news was that she appeared to have spina bifida and a Chiari malformation. An amnio was performed that day to see if there were any problems genetically (two weeks later we received the results and there were none)We were then sent over to meet with my regular OB doctor. She was very persistent on terminating the pregnancy saying she has multiple problems and that things did not look good for her outcome. We knew we would not be choosing this option. If God gave us this little girl and she was still living she was doing so for a reason. We asked her to send us to a different perinatal doctor for a second opinion. Her words were "He is the best, you do not need a second opinion". With that we were sent home.
Well needless to say I was not satisfied. We found a perinatal doctor on our own and had an appointment with him within a week. He was alot more thorough during the sonogram. He explained things much better than the first doctor. He did not see any sign of spina bifida. However he did see a small cephalocele on the back of her head (very small did not contain brain tissue). Her ventricles were enlarged and she appeared to have a Chiari Malformation.
I have since had many sonograms as well as a fetal MRI. It has been concluded that Bryleigh has hydrocephalus, a small cephalocele on the back of her head, and Arnold Chiari Malformation II. Normally with the ACMII and the hydrocephalus, babies do have spina bifida, Bryleigh does not. At my last sonogram I was 27w3d her ventricles were measuring at 23mm and her head size was measuring 31w (4 weeks ahead). Bryleigh will likely have a shunt placed following her birth to releive the pressure caused by the hydrocephalus. My OB doctor (I have switched) has my c-section date scheduled for January 12th, 2009. My original due date was January 23rd, 2009.

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We are going to be preserving her cord blood at birth and plan on having her infused within a month after birth at Duke University in NC. This is not a proven method but it is believed to restore some cognitive brain functionality. We will have to travel along ways but I believe it is worth it if it can possibly help our little girl in any way. I learned about this by researching on the internet and I came across a great site http://www.fetalhydrocephalus.com/hydro/Infusions-1.aspx.

We just pray everyday that everything will work out for our little girl. She is our little miracle and we cannot wait to welcome her into this world.

3 comments:

Josephine said...

Hi, thanks for stopping by my blog. I just read your post, and I can't believe your doctors wanted you to terminate your pregnancy - I'm with you that God knows what he's doing, and your little girl will be a huge blessing in your life. I look forward to reading more of your blog, and my prayers are with you and your little girl.

Lisa said...

Hi! I read your story and related so much to what you are going through.

We took our daughter Elisabeth to Duke a year ago and we are so glad we did. In fact, we are planning on taking her for a second infusion at some point (they kept a reserve of her cells). She has had some more damage to her brain since birth due to epilepsy issues.

Anyways, enjoy your pregnancy and try to focus on the good. She is going to be your sweet child, and that is all that matters.

I'll check back to see how you are doing :)

Kristen said...

Hi! I see you are marked as one of my followers. I came over to your blog and see you have a very similar story. My daughter Cayman was diagnosed with Hydrocephalus when I was 20 weeks pregnant too. We too took her to Duke for the stem cell infusion as well. Between that and the care from a Naturopath were the two best things we could ever have done for her. Where do you live? Cayman's Naturopath is an unbelievably wonderful man. If your baby girl could have the opportunity to go to him I deeply encourage it! Since we have taken Cayman to him we have seen such amazing brain and development growth. I'm so excited about it!!

Your ultrasound pictures are absolutely so sweet.

I'll be checking back to see how you are doing. I remember my last few months of pregnancy were very scary and sweet at the same time. Hang in there and try to make the best of it. Soon Bryleigh will be here and you'll be amazed how in so many ways it does get easier having her tangible.