Tuesday, 24 September 2013

The Latest with Sally-Pink

Today we went in to Aberdeen Maternity Hospital to see Dr. Fairly an obstetrician for another ultrasound and the results from our MRI in August.
First, the MRI confirmed to us what the ultrasounds have said all along. Our baby, whom we fondly refer to as "Sally-Pink" because those are the chosen names for her by her big sisters, has Dandy-Walker Syndrome (DWS).
In Sally-Pink's case this means she has a complete separation of her two cerebellar hemispheres and there is no connective tissue (vermis) between the spheres. The cerebellum is the back portion of your brain that is responsible for coordination and motor skills among other things.
With DWS there is a huge spectrum of severity and there is no way for us to know until after birth and possibly months later the degree of her handicap.

In the scan today Dr. Fairly confirmed there is no change to Sally-Pink's condition, but also that the rest of her brain looks completely normal and both her head and body are right on track as far as growth is concerned. This is good news for us as most of the time with DWS being caused by a chromosomal abnormality there is another malformation present in the body.
This is tentatively hopeful as 2 out of the 3 chromosomal problems most likely to cause DWS are "lethal" meaning she may not survive long after birth. We still are not and will not be 100% certain of this until the she is born, so please keep praying specifically about this.

We also saw a neonatologist today who talked about postnatal concerns and possible problems with us. Like I mentioned before there is no way the Dr's can pinpoint or even give us a range of Sally-Pink's handicap, we will just have to wait as she matures.
The greatest threat is hydrocephalus, or water on the brain. Because Sally-Pink still has a cyst present near her cerebellum this can block the cushion of fluid surrounding the brain leading to swelling and pressure on the brain. While this is a dangerous condition it is easily detected (by measurements of the head and ultrasound) and treated by a shunt.
The neonatologist also essentially said the science of the brain is inexact. Meaning that when God created this amazing, super-duper-duper-duper-duper (in Nessie's phrasing) computer of an organ He made it so that it can and often does compensate for loss or problems. The brain is incredible and can overcome great odds--to us: God still works miracles in what He's created!

What we did find out today is that we are going to meet Sally-Pink a little sooner than we originally thought. There is an increased risk for stillbirth with babies who have problems who are allowed to go full-term or beyond. Therefore Dr. Fairly is going to do one more scan in a fortnight (that's 2 weeks for all our American friends) and we will then schedule an induction for the next week. I will be at or around 38 weeks pregnant. Because I've had 3 natural births previously I will deliver with a midwife (obstetricians are not commonly used for antenatal care or deliveries in the UK) in Aberdeen with a neonatologist present. As with my past pregnancies I have gestational thrombocytopenia which means I have a low platelet count. It's never been an issue except a C-section isn't ideal when there's a risk of bleeding. Natural is the best for me and should be fine for Sally-Pink. We are excited about this and meeting our precious daughter so soon even in our uncertainty of the future.

Please continue to lift us up in prayer, specifically that this is not a chromosomal abnormality and that the cyst doesn't cause any problems.
In our household we are praying for a miracle--those who watch our story unfold can't help but see that we serve the One True God and He is mighty to save.

Most of all throughout all this, however God choses to write this story, that our family and this precious baby girl will glorify Him.


  1. Thanks for the update on our Sweet Baby Girl, "Sally-Pink"!

  2. Teary-eyed and praying. Beautiful report and we love her name. As Robbie just said, "It's different when you walk by faith."

  3. Teary-eyed and praying. Beautiful report and we love her name. As Robbie just said, "It's different when you walk by faith."

  4. Hello!! I didn't know anything about this (or even you being pregnant again! :)) until a couple weeks ago when chelle updated me. We spent a little time in prayer for you and your baby and I've been continuing to pray as I've waited on an update...and will continue to pray! Love you--and your baby's name. ;)

  5. Praying for you daily! God is ALWAYS in control, even when it's hard for our eyes to see how the story turns out. It is ultimately His story, after all.

  6. Thank you all, God is good to us especially in the support of fellow believers!