Amaya with her mother

In this life we face many trials. Many times in the past months we have heard these trials referred to as “storms”. Some trials are thunderstorms, some are tropical storms, and some are much bigger. On April 12th, 2006 we were hit with a category 5 hurricane, completely devastating. At a routine ultrasound appt. for our 4th baby girl the doctor told us he suspected that our baby had “trisomy 13”. This, he said, is a lethal condition and is incompatible with life. Amaya had many anomalities including a cleft lip, 2 holes in her heart and her brain had not separated properly. The next hour was a blur, the doctor talked and we tried to listen. He suggested termination, saying that Amaya was not going to live. If she survives the pregnancy and the birth, he said, she will not live long. The words rang in our ears as the tears fell, all we could do was pray and hold each other. 

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."”
 Psalm 139:13-14

We had no idea what God's plan was, but we knew He had created Amaya and given her to us. We were going to cherish every moment with her. Over the next 4 months we learned to trust God in a completely new way. We had to trust Him completely with our daughter's life, she took our faith to a whole new level. We prayed for God to heal her, knowing that He was capable. We also told Him we trusted His plan for her life, as well as ours, and that we would praise Him in this storm, no matter the outcome. Amaya held on, small but strong, through our pregnancy and blessed us with her presence on August 12th 2006 at 11:23am, weighing 4lbs 5oz and was 17 1/2" long. She was barely breathing and needed resuscitation, after two failed intubations, we knew it was only God who got her to start breathing. It was at least 5 minutes (seemed like an eternity) before I heard her first cry. The moments were terrifying; we cried and prayed to just have a little time with her. She was stabilized enough to be held for just a minute before they took her and Aaron off to the NICU. The week was full of emotion, love and joy. Each day we loved her more and more and we saw the way she touched so many lives. We had 7 days 19 hours and 44 minutes with our precious baby girl and will cherish every minute she was with us. She brought us an everlasting joy. I cannot put into words the pain that goes through you as you watch your baby girl slip away into eternity, thankful for the time you had with her, but not wanting to let go. I held her close to me, as Aaron embraced both of us, and stroked her cheeks softly until we knew she was with Jesus. Straight from our arms and into His.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
”Romans 8:28

We do not question God, but instead rejoice that we were chosen to be Amaya's parents. It was an honor and privilege to carry her, hold her, and to love her. We know that God's plan is great, and we would not trade one minute we had with her.

Back To Trisomy 13...

You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org. 

-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.