Our story began on June 19, 2006 with the birth of our precious baby boy Lincoln Tanner Roberts. I gave natural birth at 10:26 in the morning at 38 weeks; he weighed 6 lbs 5 oz and was 18 inches long. The nurse handed me our baby and after finding out that we had a boy, noticed that he had an extra digit on each hand. We were assured this was common and that it could easily be taken care of. We had a few hours with Lincoln before the nurse change and the taking of Lincoln to the nursery. We had no idea that anything was wrong until the neonatologist came in to speak to us and let us know that they had to put in an IV and give him oxygen. She explained to us that she believed that Lincoln had Trisomy 13 but couldn’t give us a definite positive answer until the blood work came back. She told us that the condition is fatal and that we would probably have a few days with him. We at once went to the NICU to spend time with him as we did not know how long we would have. It seems a blur looking back on that time. A rush of pure joy of just having a child and a rush of devastation of finding out that your child is going to pass away. We spent a full week at Phoenix Baptist Hospital. The nurses and doctors were so amazing; they taught us how to care for Lincoln as he was on oxygen and a feeding tube. He was able to suck but just not enough for a full feeding. We decided to bring Lincoln home on Monday morning June 26th; it was one of the scariest days of my life. We had a rush of emotions of not feeling prepared to care for our sick baby and not knowing how long he would be with us. We did have the wonderful support of Hospice of the Valley. Having Lincoln at home was so great, he transitioned well and it was so great to be together as a family with our 1-year old son. Lincoln continued to do well, eating more and needing less oxygen. He wasn’t as sensitive to light and noise and could even tolerate his brother messing with him a little. We had so much hope that he would be with us for a long time. On Wednesday July 5th he had his first apnea episode, he couldn’t get settled down and held his breath while he was crying and passed out from lack of oxygen. We were so shaken. The following day he continued to have more episodes and we knew that he wasn’t doing well. We had a family friend come over to take pictures on Thursday afternoon and about one hour after she left Lincoln really started to go downhill. He stopped breathing for almost 4 minutes and we thought he had passed and then all of a sudden he took a huge gasp of air and regained breathing. It felt as though our heart was being ripped out every time this happened. This continued through the night many times over, he just kept holding on. We said goodbyes so many times, it was torture. I couldn’t let go of him, I wanted every second I could holding my incredible son. He took his last actual breath in the arms of his daddy and passed away in his mommy’s arms. I held him for a long time, rocking him and weeping. Lincoln went to be with Jesus on July 7th at 1:40 in the afternoon. We were able to have 18 days together. During our journey with Lincoln there is a scripture that fully explains our feelings in all that we went through in this struggle. It is Lamentations 3:1-32, it speaks of desperation and feeling of abandonment and in the middle it starts to speak of hope and God’s mercies and that we won’t be consumed. This scripture was a huge encouragement to know that God’s mercies don’t fail. I still don’t understand why this happened, I’m sure I never will. But I do know that God is gracious and He is still faithful. If there is anyone that reads this and is in the Phoenix area and wants to talk to someone who has gone through the experience of having a Trisomy 13 baby I would love to talk, listen and cry with you. Mark & Jill Roberts 623-521-0212 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.
