...so that you would know how to pray.
This is a current picture of our family. We are expecting another baby girl this summer whom we've named Elizabeth. She will face certain challenges when she is born. These are detailed in our letter below.
Dear Friends of the Ake's,
It is with heavy hearts that we would like to share with you some recent events in the life of our family.
Last Monday (March 5) Jamie and I went to her 20 week sonogram to have a checkup on our new baby on the way. We were very excited as we were also going to find out whether we would be having a bouncing baby boy or another wonderful girl.
During the exam the technician gave us the news that we were going to have another baby girl (which we were extremely excited about as we had decided to call her Elizabeth Adele); but she also noticed a few distinct abnormalities. She mentioned to us that we would need to get more information from Jamie's physician. With only that bit of information we spent the next 24 hours with our stomachs in knots.
The following morning we met with Jamie's CNW and she informed us that the sonogram results were typical for Spina Bifida and that she would arrange for us to meet with another physician who could perform a more detailed ultrasound.
What followed was a whirlwind of doctor visits, tests and difficult meetings. Finally on Thursday the diagnosis was confirmed. Our new little daughter still growing in Jamie's womb has Spina Bifida with a Chiari Type II Malformation. I know that is a lot of technical terminology but simply put, here is what our little Elizabeth is facing right now.
There is approximately a 1cm hole in the lower portion of her back (specifically between L2-L5 of her spinal cord). This results when the tissues protecting the spinal chord fail to close during the first 8 weeks of pregnancy. There is a chain reaction of events that follow the condition. Her spinal chord is spilling out from her back through the opening (although how much is still unknown). This also causes the spinal chord to yank on the brainstem which in turn pulls
the brain against the back of the skull. This results in a buildup of pressure in the ventricles (a plumbing system in the brain to move the CSF or Cerebral Spinal Fluid) which also begin to expand and put increased pressure on the brain itself. The Chiari Malformation occurs because the Cerebellum at the base of the brain begins to slip through the large opening at the base of the skull.
This has come as a complete shock to Jamie and I. While the Dr's. diagnosis is quite certain the prognosis is sketchy. Elizabeth will have some type of physical handicap due to the exposure of her spinal chord. It is unknown how severe it will be but based on the size of the openings it could be very severe. In addition, due to the pressure on Elizabeth's brain, there is danger that it could cause some severe brain damage as well. Children with Spina Bifida have many other associated problems that we haven't even begun to find out about yet and when Elizabeth is born she will require several complicated surgeries within the first few days of her life.
So what does the immediate future hold? As we continue to come to terms with this as a family and as a mommy and daddy we are facing several months of visits with neurosurgeons and ongoing sonograms to see if Elizabeth is in any more danger. Jamie's due date is around July 22nd although we all know that babies will come when they are ready. While are hearts are definitely in turmoil right now we have comforted ourselves with the fact that Elizabeth belongs to our Lord. She will be born with a distinct personality and is a welcomed and loved addition to our family. It will certainly be a challenge for us to learn to care for her unique needs but Jamie and I believe that her relationship with Christ, and not her physical challenges, will determine the direction and significance of her life. As parents, we do not wish this on our precious daughter. Those of you
who know Becca also know blessed we are with her and how wonderful it is to have a healthy child. But we believe that she will be a kind and loving big sister.
We love you all and wanted to inform you of what we do know and ask that you pray for us. We serve a mighty God who will act in this situation in a loving and sovereign way. First, we ask that you pray with us for a complete healing of the hole in her back and that all the pressures and organs return to their normal state. Second, we ask that you pray that regardless of her condition at birth, that the effects of the Spina Bifida would be as minimal as possible. Third, please pray for us as a family. That we would cling to the Lord and his hope, that in our weak and dependant state, that we would trust in Him to guide us through the jungle of decisions and challenges that lie ahead. My personal prayer is that while people will see us
and Elizabeth endure pain and challenges, that they would somehow see Christ at work in all that is going on in our lives and that there would be a distinct testimony through our life and through Elizabeth's life.
We definitely will need your support and encouragement as friends and brothers and sisters in Christ. Your prayers, your laughter, knowing what's going on in your lives, trips to Starbucks, popping in for a visit; please do not stop doing those things. I know that it can be awkward sometimes, what questions should you ask, what shouldn't you ask? Please don't worry. We will gladly share with you how we are feeling and what we are facing. With my medical background and my
personality type I'm definitely the one to field questions and bring you up to date on all the details. As the mommy though, it is difficult for Jamie to share the details over and over. We'd like her to focus on just being a mom. She has asked that as those you who know and love us remain a presence in our lives. She needs the most encouragement as the next few months will be especially rough for her. In fact, in one of our many discussions, she shared with me "I don't want people to feel sorry for us. I just want them to roll up their sleeves and stay involved in our lives."
So that's the picture as we have it right now. We will certainly let you all know more as we find out ourselves. Please feel free to call us and check in with us. We love you all and look forward the next great thing that God is doing in YOUR lives. God is certainly at work in ours. Elizabeth will always be a loving reminder of that fact.
Because of Him we have hope,
David, Jamie, Becca and Elizabeth (Lizzie)
Phil. 3:20, 21
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