Carsen

Carsen Christina is our little miracle baby. My husband and I tried to conceive for over 4 years and with no success. Finally one day our prayers were answered. We were so blessed and excited to finally start our family! My pregnancy was uneventful and I was so excited to be pregnant that I actually think I felt great the entire time. No morning sickness or aches and pains could bring me down from cloud 9!

As my pregnancy progressed and I was getting into the third trimester, I kept hearing "how small" I was carrying my baby girl for as late in the pregnancy that it was. I brought this concern up to my doctor but since I felt great, the baby's heart rate was always very good, and both my husband and I were small 6 pound babies, there seemed to be no concern. We had an ultrasound at week 32 just to ease my nerves and that is when our world came crashing down!

We were told there were various heart abnormalities, possible head malformations, and what the high-risk doctor suspected to all be related to a chromosome disorder. After an amniocentesis, results were confirmed at week 35 that our baby had Trisomy 15 (ring and mosaicism), a very rare and deadly chromosome disorder. The geneticist we met with the following week was head of the department and he had never seen a case of this extremely rare disorder, let alone be able to find hardly any reported cases or research on this. We were told that with Carsen's exact case of the ring 15 with mosaicism, that she would be severely to profoundly retarded, and have some or all of the following physical appearances: clubbed feet, cleft to double-cleft palate, asymmetrical facial features, sloping eyes and forehead, bulbous nose, clenched fists, etc.... that is of course, if she survived the birth process! Needless to say, we were devastated. We left that appointment and went directly to church to pray to God. We asked Him to give us strength to get through whatever we were about to be faced with. We know that it was through God's grace that we got through the next 2 weeks, in which then I was induced. We did not bring along the car seat to the hospital because the medical professionals continuously prepared us for the worst case scenario, and I couldn't bear to bring the car seat back home empty.

On June 12, 2007 our BEAUTIFUL baby girl was born. She was eating and breathing on her own and she was sent home with us to love and care for just two days after her birth! We were sent home with the continuous support of Hospice, for even though Carsen was alive and well, the medical outlook on her life was still very dismal. Here we are 7 months later with a thriving, adorable, petite little angel who has brought more joy to our lives then we ever thought possible. She continues to amaze us as she is not on medication of any kind and continues to eat and breathe without assistance.

She currently has multiple heart defects along with severe growth restriction from her chromosome abnormality, but we are taking each day one minute at a time and are trying to pursue early learning intervention for her. We are so blessed and have learned so much from her; we never take one thing in her life for granted, and we stopped asking God "why?" We now know the answer...."For this child I prayed and the Lord has given me what I've asked of Him. So now I give him to the Lord" --Samuel 1:27-28. With this verse and our experience, we surrender Carsen to the Lord each day ever since she's been born, and each day He has given her back to us to cherish for yet another beautiful day!

Back to Rare Trisomies, Ring, and Deletions

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.