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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

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A Note from Elizabeth

Hello,

From the beginning of every pregnancy (I've had 14!!), I pray to my heavenly Father for a healthy baby. I always say, "I don't care what it is, boy or girl, just a healthy baby." Well, my 8th child was born with Trisomy 13 mosaic and a few of its physical defects. He was born with a bilateral cleft lip and palate, 3 repairable heart defects (ASD, VSD, PDA), malrotation of the small intestines and the little bugger performs these very scary events I "fondly" refer to as B.H.S. - Breath holding spells. He performs these only when crying. Try to keep a baby from crying! We have had to administer infant CPR and acquire oxygen for the home and "bag" him a few times. He's a complicated little guy! But he's lovely - and he's who God placed in our home and in our lives. A perfect heavenly Father chose him for us and us for him. I never would have thought during his pregnancy that I could go through this and cope with what our whole family has had to cope with this year - but the Lord has given us just what we've needed to cope just when we've needed it. When I think of our Stephen, Psalm 139 is ever flowing in my head - "For I am fearfully and wonderfully made!" physically perfectly made? No. "For You formed my inward parts; You wove me in my mother's womb."
Stephen may never physically speak words - we don't know yet - but his life has spoken volumes to our family and to our friends and to our church family and to doctors and nurses and to people who are struggling with their ailing children. And Stephen can speak volumes of joy with his gorgeous blue eyes - you must visit the LivingwithTrisomy webpage at http://www.livingwithtrisomy13.org/album18.htm  and take a little look at him.

I was shocked when I found out at our ultrasound appointment that our baby had a cleft lip and possible cleft palate. I cried. My husband cried. There is nothing more beautiful than a baby's perfect face. It took me only one day to get used to Stephen's crazy lip formation, and then I was hooked! In fact , I felt a little pang of regret when we had his lip repaired a month ago - because it changed the baby I grew to love. Now, I'm used to the new lip!

My husband and I choose not to have the amniocentesis test done because we feel very strongly against abortion and we feel that that makes women consider abortion if there is something physically wrong with the fetus.

We homeschool our other 7 children. Needless to say, it has been a not-so-optimal year of schooling, but they've come through it and we've made a few changes for next year's homeschooling. Two of my children have bonded to Stephen in an incredibly sensitive way . To the others, he's just another baby in our household! Thank goodness the Lord gave him to us as our 8th baby because just about all of us are needed to carry him around and keep him from crying. There have been 4 hospital stays where I have not left Stephen and I haven't been around for my other children. Did we miss each other? Yes, very much. Did they survive without any emotional scaring? I think so. God will honor your efforts. We prayed for God's grace to cover our home on our absence. He is ever faithful. I spent the first 3 months living in fear. I was a nervous, jittery wreck inside. During Stephen's heart surgery (VSD repair), God taught me a little about trusting Him. I want to protect my children from many things, but I won't be able to protect them like my heavenly Father. Psalm 118 is a beautiful Psalm; I encourage you to read it. During Stephen's shaky first days of recovery post heart surgery, the Lord gave me this verse for Stephen just for that time -"I will not die, but live, and tell of the works of the Lord." And that is just what Stephen's life is doing! He also showed me Romans 15:13 "May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." He allowed me to finally be at peace and not live in a constant state of fear that I was going to lose my baby at any moment. I may lose him at any time, but God will choose it and it will be perfect for both Stephen and me. "Your eyes have seen my unformed substance; and in Your book were all written the days that were ordained for me, when as yet there was not one of them." (Psalm 139:16)

Encouraging you to take the road less taken,
Love,
Elizabeth 

Gary & Elizabeth Comparetto garycomp@mitre.org

Stephen's story and photos