kyla-chosen to be my daughter

Kyla is my daughter. At 3 months old, she was diagnosed with 8P- Syndrome (A rare chromosomal disorder involving deletion of the short arm (p) of chromosome 8 resulting in various abnormalities), with a deletion designation of 23.1. Kyla was born with a congenital heart defect of a complete atrial and ventricular septal defects, skeletal malformations- diagnosed at 2 years of age, and focal cortical dysplasia (a congenital birth defect that stems from abnormal brain development in an unborn child) diagnosed at 5 years.

At 3 months old, having only the heart and syndrome diagnosis, we were told that she would be completely mentally retarded, relying on others for her entire life. Our first response was shock and utter disbelief. This was our perfect baby girl, our wonderful little gift from God…and she would forever be at the mercy of others? This is not the life that any parent envisions for their child when they find out that they are carrying a precious baby. I feel very fortunate that the Lord prepared me for this in a small way. Throughout my pregnancy, I just had a feeling that something was very wrong. The ultrasounds didn’t show anything, and all of the other markers were perfect. By all accounts, I and my baby were in perfect health…until the day she was born.

At my follow up appointment with my OB/GYN, she was shocked…and embarrassed that they’d missed something so big. I then proceeded to be horrified as she apologized that I hadn’t had the chance to terminate the pregnancy. Terminate??? This thought was not even one that had crossed my mind!  Regardless of the challenges my child would face…God’s child, created exactly the way He intended for her to be, I would never have chosen termination.  Who am I to say that the gift that God has so richly blessed me with, isn’t good enough? Who am I to say that her life was not worth living? Imagine what they would have told me if they had found all of her issues while I still carried her.

6 years later, Kyla is in Kindergarten…and doing very well.  She has received early interventions since she was 2, and will in fact, go on to lead a perfectly “normal” life…whatever that is! The little girl who I would have been advised to abort, the little girl who had no future, is a bright and shining star. Her strength and stamina are an inspiration to me every day! Even on the days I wish she had an off  button! She has such an internal joy and great sense of wonder with the world around her. Everything is a game to her, everything is something to explore and learn about…even if it does make a huge mess for me to clean up!

My point here is that typical or not, all of our kids challenge us.  All of our kids have challenges!  There are no perfect children, and there are no perfect parents.  But through my faith in God, I see that God gifted me with the perfect child for me.  And God gifted her with the perfect parents for her.

Do I believe that God will always do what’s best for us?  Absolutely.  If any of us really believes that…how can we end the lives of our children, before they’ve even begun?  If we truly believe that God is perfect, and doesn’t make mistakes…how can we then say that this child is a mistake…not worthy of life?  If we believe that God has a great and mighty purpose for every citizen of His Kingdom, how do we judge our unborn children, saying that their purpose is not great enough to be carried out? These are questions that I just don’t have the answers to.

I will end Kyla’s story with this.  I was told that I would never have children, that I could conceive, but not carry. I had been told this by 3 different doctors. I had accepted the fact that my children would be adopted…and I was more than okay with that. Five weeks after my husband and I were married, we found out that I was 5 weeks pregnant.  God had opened my womb to bear life…to bear one of His sacred children.  God had opened my womb in the same way that he had opened the wombs of some of the greatest women in the Bible.  God defied the medical world, and blessed me with a family in a way that I thought (and had been told) was impossible.

How many people try to have children for years and years, only to find out that the child they are carrying, is not the one they pictured?  And how many of those parents terminate their pregnancies, only to live with regret and guilt? Those are just 2 more questions that I don’t have the answers to.

I pray that everyone who reads this story sees the blessing that our daughter is to us, and that we are a blessing for her.  That God chooses everything…and it is good.

Comments

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  1. love that, it says alot in here that most of us think but couldnt put to words so gracefully.

  2. WOW!!!

  3. Staceyanne says:

    Thank you SOOO much for sharing your beautiful story, your precious daughter!!! I live every day feeling the same things, knowing the same things, about my perfect son- I do not see the ventilator, or the wheelchair, or the feeding tube. I only see love and joy, I hear only his sweet voice singing all day, and feel so truly blessed that the Lord gifted me with the honor and blessing of this most perfect, miraculous child.

  4. What a blessing this story is to all…even to those who cannot and do not bear children. God does not make mistakes and hands us the greatest challenges to be able to give more praise and glory to His Name. May His Name be gloried through this story to others.

  5. Beautiful story, beautiful mommy and child. God bless you and keep you.

  6. Mary Ann says:

    Thank you so much for the encouragement you gave reading your “faith walk” of trust in God’s power. We just found out on Friday that our daughter has trisomy 8p and she is now 14 months old. Around 5 weeks old pulmonary stenosis was discovered and we’ve been having gross motor delays since. Does Kayla continue with early interventions now?
    God bless you for sharing that powerful trust in God and the sacredness of life.

  7. Thank you for your story :) Ive just turned 20 a single parent and my son was born 13 weeks ago with chromosome 8p deletion. he is currently in intensive care after 2 major heart operations. I had seven scans and they told me everything was fine he was healthy and that he would just be born small. I had to have an emergency c-section as his heart rate was dropping at a contraction. He was born and he got whisked away from me. when i woke up they told me he had heart problems. We was transferred to the children’s hospital and then they told me about his condition. Hes my whole world and such a fighter he had 2 open heart surgery’s 2 weeks after he was born and 2 weeks ago i could take him home. On the Monday night i realized his breathing sounded different so we took him back up to the hopsital and they found out he had early stages of heart failure thats when they decided they had to operate again. His pulled through. Im just blessed god has given me such a strong little boy. Your story is has given me hope :)
    Thank you

  8. Thank you for sharing your testimonies. I pray God will use your testimony to encourage others who have been intrusted to raise children who are so very special. I would not trade one day of my life with my 39 year old son Joseph, in spite of his severe mental retardation and physical disabilities. He is truly a gift from God, for the joy set before me, anticipating the day in heaven when we will all rejoice in Jesus’ presence, that Joseph is free at last! Remember your special babies and children are even more special to our heavenly Father; they are His first. Spend time to tell them of His great love for them. He sings to them when we are not aware!

  9. Timi: Thank you for so articulately sharing your story. In some ways it is very similar to mine and my husbands. We were married for 17 years and had gone through extensive infertility workups and inseminations to become pregnant only to be disappointed time after time. To make a long and amazing story very short, we became pregnant when I was 39 and my husband was 40. I refused to have an amnio because of the risk of losing the baby. The one and only baby I had ever carried or conceived. I had no indication that anything was different about this baby or this pregnancy. At 5 mos he did not pass the developmental milestones he should have and thus we started investigating these issues. After 18 long months of seeking diagnosis, our son was diagnosed with a rare brain malformation which affects his nervous system, balance, vision, speech, hunger, thirst and he is developmentally challenged as well. BUT with all this said, I would not have wanted to know about all of this prior to birth as I would have been so frightened. I needed to learn as I went and take in the information as it unfolded. He is now 19 and is a complete delight. Challenged< yes. Would I have volunteered for this assignment? NO, Would I change it if it meant never having known him and having the God given honor to be his mother? NO!! He is an instrument in the hands of God to change me and get me closer to the likeness of Christ. I Guarantee you it could not have happened any other way. I praise GOd for this gift he brought me. I do not say that lightly, as it is a lot of work and sacrafice of oneself, but it is worth it to know the Lord better and to view the world differently.

  10. I read your story and it gives me hope. I am 25 weeks pregnant and my daughter was dignosed with CAVSD/wTOF CDH and dandy walker malformation variant. From SNP Array they found that she has 8p 23.1 deletion syndrome. Your story gives me hope.

    • I have also a son with the 8P 23.1 deletion. He is now 4 years old and doing it very well. He is just a kid with a separate manual ;-) Never give up hope!

  11. My 9 year old has 8p23.1 deletion syndrome also.

    • Melinda: our son Marcos, 6 years old by now, has the 8p 23.1 deletion and, although he is a happy and connected boy, he hardly speaks, not more than 10 words. His behavior and skills are those of a 2 years old child. Would you be as kind to tell me how is your boy progressing, if he is attending normal or special school, and where, what kind of treatment do you think has made him benefit, etc. The school our son is attending, a “normal” one but not the one his brothers are attending, is not willing to have him any more, and I have been searching for a new one but the all answer me they don’t have place for him. In Argentina is very very difficult to find a school that accepts a child like ours. Thank you for all the information you can give us.

  12. Chris and Alicia says:

    our daughter was also born with this chromosonal disorder. I am so glad to here other stoies such as yours as it gives us hope. We have also provided early intervention for her as well. She is currently 2 years of age. God bless!

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