Monday, July 9, 2012

The Beginning

I have decided to start a blog for our son, Gavin, in an effort to document the successes and challenges of his life for our family, friends and those who may not know us personally, but support and pray for our journey.




BACKGROUND
Chris and I have an 18 month old daughter named Lorelai.  She is a vibrant, strong-willed, enchanting baby girl who has brought an indescrible love and joy into our lives.  We are expecting our second child, Gavin in early November of this year, which will give us two babies in two calendar years!

At around sixteen weeks pregnant with Gavin, my quad screen came back positive for down syndrome.  Based on my results, I was given a 1 in 54 chance that our baby would be affected by the disorder.  We followed up  (at 20 weeks) with an ultrasound at Maternal Fetal Medicine in Virginia Beach, only to discover more markers indicative of down syndrome.  That same day, I took a blood test, called MaterniT21, which looks at the baby's DNA in my blood stream to determine if there are any additional chromosomes.  That test came back positive and has a 99.4% accuracy rate in determining Trisomy 21, which is the most common form of Down Syndrome.

Our ultrasound at Maternal Fetal Medicine also indicated a congenital heart defect.  At 22 weeks pregnant, we met with a fetal echocardiologist.  At this appointment, Gavin was diagnosed with Tetralogy of Fallot (TOF) which is a heart disease affecting four segments of his heart.  TOF is treated with open heart surgery, and often can wait several months, sometimes years, before operating.  However, Gavin's particular echocardiogram determined that open heart surgery is going to have to occur immediately after birth.  There is a critical concern with his heart's ability to pump any oxygen rich blood to his lungs.  His particular defect in this area of TOF is severe enough to require immediate open heart surgery.

During this same echocardiogram, we were told that Gavin has a narrowing in his intestines that will prevent any food/milk from leaving his body.  This will also require fairly immediate surgery, but the gastrointestinal surgery will have to wait until his heart surgery is completed and he is stable.  Until this second surgery is complete, he can only receive nutrition through an IV.  Our more immediate concern is that this condition may cause fluid to build up in the uterus and force us into labor prematurely.  Complications from a premature delivery will only make all of these obstacles more formidable for our little guy.

All of these factors together make us a high risk pregnancy.  We will be delivering at Sentara Norfolk so that the pediatric surgeons at CHKD can take Gavin immediately and work their miracles on saving his life.  This has been a terrifying, emotional and overwhelming time for our family.  Down Syndrome alone is a medical justification for termination of pregnancy.  The heart and intestinal conditions are each justifications for termination in their own right.  The combination of all three means that we are constantly met with phrases like, "If you choose to proceed with this pregnancy", "If you choose to have the baby", or "You will need to determine whether or not this is something you would like to continue with."  I strongly feel that this decision is any woman's, or couple's, right based on their own experience and beliefs.  But for us, we have seen Gavin all over the ultrasound.  And I can feel him kick and move all the time.  Chris and I have to fight for our son and ensure that we do everything in our power to give him the best life possible.  No matter what challenges he may be born with or encounter, we will not give up on him.  We will be there every step of the way and do everything we can to surround our son with unconditional love and support.  He may not be a "perfectly" healthy baby, but he is ours and he will be perfect in his imperfections.  I can't wait to meet him and hold him, no matter how long that takes.


14 comments:

  1. Hey Mary Beth and family! I will be praying for you, Gavin and your family! I admire your will to keep fighting for baby Gavin! Most people would have given up when they heard about the possibility of Down Syndrome! I really admire that you have chosen to fight despite the hard times ahead!

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    1. Thank you so much for the support and encouragement. It really helps!

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  2. Hi Mary Beth! Amanda McGhee thought that we should be in touch. I too have a young child (a 5 months old daughter) who happens to have DS. We had a similar doom and gloom pregnancy but never gave up hope! When Ellie was born, by the grace of God, she was relatively healthy! I would love to be in touch. Like you, we started a blog when I was pregnant to keep everyone abreast of what was going on with Ellie. If you would like, you can e-mail me at laurenmeekins@comcast.net and I will gladly pass our blog along to you!

    Wishing you the very best,
    Lauren

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    1. Thank you so much for reaching out. This was another one of my goals with starting this blog. I wanted to find others who have been through what we are going through who could give us advice and support, and hopefully one day we would be able to do the same, in turn, for people that will be where we find ourselves now. We just read through your blog and found it so uplifting! Thank you for sharing. :)

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  3. Hey MB! I just want you to know you are in my prayers. God has chosen you to be the mother of a special little boy and he did that because he knows you are strong. Your son is coming here for a reason and his life has a greater purpose. I will be thinking of you!
    Tiffany

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    1. You are too sweet. Thank you so much for the kind words and for helping keep a positive outlook!

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  4. Hi MaryBeth! I don't know you personally, but I got your blog from Jenn S-P with Moms' Gotta Run. I am so thrilled to here you say that you are going to fight for your little boy's health! I wanted to let you know of an organization called the Down Syndrome Association of Hampton Roads http://www.dsahr.org/. I have had many events for them at The Little Gym where I work and many of their children have faced the same obstacles that your Gavin will go through. Just thought I would pass that along with our prayers!

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    1. Thanks for the link. We are definitely interested in getting in touch with them. And my daughter loves the Little Gym! I was actually talking to Chris the other day about whether or not it was something we would be able to get Gavin involved with. Thanks for reaching out!

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  5. MaryBeth, I do don't know personally and I doubt that our paths have crossed. But Jenn S-P posted your blog and felt lead to read it. May God be ever present during your pregnancy, delivery and thoughout Gavin's life. I agree with Tiffany above, God has choosen you for this beautiful child and He has a very specific purpose in it all. I'll be praying for you. I'm going now to add you to my prayer journal so that I don't forget and this are not just words spoken but faith put into action.

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    1. Thank you so much. I love seeing faith put into action!

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  6. Hi Mary Beth...I heard about your story through the Stroller Strides FB Page. I'm so sorry to hear about the challenges you and your family are facing with your new little boy. I too believe in the power of miracles and pray that God is with your family, Gavin and all of the medical drs/nurses who come in contact with you. I have been following the story of a new little boy (Easton) who has a series of medical issues. He was born a couple of weeks ago and while his medical conditions are different than Gavin's, Easton had open heart surgery earlier this week. It was his second surgery. Easton's mom has been very open and honest about her fears and God's hand in Easton's life. While I don't know either of you, I thought you might enjoy having the option to contact another mom who is facing some of the same fears you may be feeling. I attached Easton's FB page link if you're interested in contacting his mom.

    https://www.facebook.com/PrayerWarriorsForOurSweetestHeartEston

    I'll be praying for all of you over the upcoming months. May God bless your family greatly!

    Heather

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    1. This story was so inspiring and the pictures really help keep things in perspective. Thanks for sharing!

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  7. Hi Mary Beth, I read your blog and I just have to say that your words, decisions and strength are so incredibly inspirational and admirable. It's so great and touching to hear you say you're going to fight for your son's life. Noelle and I will be praying for baby Gavin, you and your family every night and if it's okay with you, I'd like to put in a prayer request for you at my Church this Sunday. Then the whole congregation will be cheering Gavin on! May God work mighty tasks through the hands and minds of the doctors and nurses who care for you and Gavin!

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  8. Mary Beth- This made me cry. Call me so you can meet Max :-)

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