In our ultrasound eight days ago yes, we found out our little one is a girl; but, we were also told that there is a little part of her brain they couldn't see and scheduled for me to go to the hospital and use their better equipment. I went yesterday. Matt and I both thought it would be alright if Matt just went to work and I went alone. That was a huge mistake we both know now.
Our little Gweneth has a condition called Agenesis of the Corpus Callosum (ACC). A bundle of nerve fibers that are supposed to hold the two hemispheres of her brain together sending information back and forth did not develop. This is most often coupled with other brain abnormalities and some degree of mental impairment. Also birth defects such as in the eyes, face, heart, and skeletal system. So far they have not detected birth defects- and that is possible, but they will monitor further.
So Gweneth will most likely be born either with down syndrome, seizures, developmental delay or retardation, increased or decreased head size, hydrocephalus, cerebral palsy, hypotonia, or a failure to thrive.
We will do an MRI on her and other ultrasounds. There are ways of recovery and rehabilitation, but no cure. "In the case of a fetus diagnosed with isolated ACC, prediction of outcome remains imprecise. Estimates of the chance for a normal developmental outcome for a case detected prenatally range from 35–85%. It has also been stated that a so-called "normal" or "asymptomatic" outcome for ACC does not exist. Subtle or cognitive and psychosocial differences have been found in patients with ACC and a normal IQ."
We definitely need your prayers. We thank God that this was discovered.
~The Hovey Family
Dec 31st, 2013
1 year ago
12 comments:
Maggie, I can only try to imagine what you are feeling right now. I am sorry. My prayers are there for you guys. It looks like you guys are having a valiant little spirit sent to your stewardship.
Maggie,
I am so sorry. You'll be in my prayers.
I have to share with you when I was pregnant with my son Jacob we were going to a genetic specialist. When we found out that he was going to be a dwarf and would possibly have other problems I'm sure I felt a few of the emotions that you must be feeling.
My biggest worry after the doom and gloom attitude of the doctors was 2 things one was how he would do in his life and would I be able to love him like I did my other children.
The answer to my first worry was that I had to stop worrying about his whole life...that would come, the Lord knows and loves him and this experience in life would give him what he needed. Even if he didn't reach the potential that I might have wanted for him it would be OK.
I have to say it's been a learning process as he was born and has grown up and is not doing the things that his cousins or peers his age can do. He's struggled with hydrocephalis and has had a few surgeries for it (there is so much they can do to help it that they didn't have in the past). I had to learn to celebrate what he could do in the way he could do it, with his timing. Once I stopped comparing him to others or worried about the "right" timing to do this or that I've been much more at peace and I've been able to enjoy him as he is and he's done so well, so much better than I might have hoped.
As for my other worry...would I be able to love him like my other children??? As soon as he was born that concern was completely gone. Once I held him in my arms the Lord immediately comforted me and I loved him with a love that equalled and even exceeded what I had felt before!
I know this time will be trying for you and your family but I know that the Lord will bless you as well and give you the stregnth to handle whatever comes as you rely on him. I know the Lord loves mothers and their willingness to sacrifice themselves and their hearts to welcome his spirits to this earth, imperfections and all. I've come to realize thats part of this mortal experience. We are all imperfect, but some imperfections are just more visible than others.
Hang in there and try not to worry too much. I'll be praying for you.
Maggie, I study this kind of thing in my classes and we learn how to treat individuals who may have some of these disorders. I thought it was interesting there isn't an AAC device applicable for that syndrome. Even those with extreme hypertonia can even manage those devices. We do often hear that these things do get diagnosed in the womb, but often the baby comes out fine. Do know that if she does end up with one of those disorders you mentioned, there are superb programs and parental supports to help the child live as normal of a life as possible, and it can start at birth. We'll keep you in our prayers for sure, but keep me updated and I can give you tips I get from my classes.
Hi Maggie, My breath caught as I read this. I think your gratitude that this was found as early as possible is the right attitude. There are so many things modern medicine can help with early detection. I will pray for your sweet girl, and I love her name!
Oh Maggie, how heart wrenching! I know you and Matt can handle anything that happens with her, though! I'll pray for you, my dear! Good thing we know the Lord is in control. :)
Wow, I can't even imagine what you guys must be feeling. I will definitely pray for you. Good thing she is being sent to a wonderful family.
Maggie, what a challenge you will have but she is Heavenly Father's daughter & yours and he will help you care for her. Her eternal destiny, to be with him, is assured. That is what we want for all our children.
Judy Flack
Maggie,
You will be in my prayers! I am sorry to hear about you little girl, but I know that you have the love to be an amazing mother no matter what child the Lord chooses to send to you. I'm sure she will be amazing!
Love, Shann
Maggie and Matt,
We are so sorry to hear about Gwenneth's condition. We just heard from Roger. We will include you all in our prayers. We know that the Lord will be with you.
Maggie and Matthew,
Judy and I were so sorry to hear about Gwenneth's condition. We just heard from Roger or we would have responded sooner. We will keep you all in our prayers. We know that the Lord will be with you all.
Maggie--
We just heard from Roger, as well, and you and your sweet family are all in our prayers. Our third son, Greg, was born with a number of birth defects (did not have ultra-sound then so it was a shock at birth). He had many challenges and surgeries over the years but we feel it helped shape his magnificent character and compassion for others -- not to mention how it helped us as his parents grow in faith and love.
Your sweet Gwenneth is blessed to have you and her brothers to help her. She is a true angel from Heavenly Father in every way.
Len and Elaine Ellis
Matthew and Maggie,
You are in our prayers. We know that the Lord will comfort and bless you and the boys and provide you with the capacity to bear new challenges. Your sweet Gweneth is lucky to come to your family and she will bless your lives in many ways as you will be a blessing to her. We love you!
David and Lorene and children
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