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“Our Fighter is now 2 years old…proving that he is COMPATIBLE WITH LIFE!!”
Dominic Anderson, Trisomy 13, 8/6/2012, Farmington, NM
On Monday, August 6, 2012 we welcomed our 2nd child Dominic Cole Anderson. He was born at 6:26 pm and weighing 4 pounds 1 ounce He was about a month early with his due date being September 1st.
At the time, we had no idea he had Trisomy 13 and journey we would soon begin to travel with our small gift from above. Every ultrasound, every check up, showed a strong healthy baby boy was growing inside of me. There were concerns of his kidneys being enlarged during my pregnancy that later on was ruled out. Nothing seemed to raise a red flag that anything was going on out of the norm.
Other than Dominic arriving a month early, everything went well with the delivery. When he started to crown the Dr. Thorpe noticed some scalp abnormalities almost like abrasions. It wasn’t long after he was out I heard the most beautiful cry! The doctor laid him on my chest and he was perfect!! I couldn’t believe I was finally meeting this little person that had been growing inside of me for the past 8 months!! This time for me had so much more meaning than just having my second child. Years before in 2007 I had a tubal pregnancy and was told there was a big possibility of never having children again. Looking down at him for that brief moment I knew my prayers had been answered and God saw fit to bless me with a second baby. He was truly my MIRACLE! During those few moments the doctor allowed Josh to cut the umbilical cord. For those few seconds we were so happy and worry free that he was finally here. Not even a minute of holding him, the nurse quickly grabbed him from me and whisked him over to the baby bed. At the time, we didn’t know it but he was struggling to breath and they were examining the marks on his head. Immediately, Dr. Thorpe was worried thinking back (out loud) making sure she didn’t use anything that would have caused those. Little did we know that was called cutis aplasia, our first sign something wasn’t right. After weighing him and cleaning him up a little, they took him to the nursery to finish everything they needed to do. I told Josh I would be fine and to go with him to make sure everything was alright.
I’m not quite sure how much time had passed but it wasn’t too long before Josh and the NP came in the room. The look on Josh’s face and tears in his eyes, I knew something wasn’t right and my heart felt like it was going to beat out of my chest. The NP started to explain to me that some of their immediate concerns and how they were having a difficult time intubating him and bagging him wasn’t working either. She told me one of the nurses came up with the idea of holding his jaw forward and by doing that they were able to bag successfully him. She also believed there to be some anomalies in his airway, she heard a very large murmur, and some other things. She said they were contacting a flight team to transfer him to Albuquerque, NM (almost 3 hours away) where they had more experience in dealing with premature babies. My heart sank and I broke down. Immediately my happiness turned into worry and fear for our little boy who I was only able to meet briefly. All I could think about was just wanting to be near him.
When the flight team finally arrived, it seemed like it had taken forever but had only been about 5 hours. They were able to intubate him right away. As they prepared him to be transported, I later found out the 5 hours before the flight team arrived, the nurses had been taking turns every 15 minutes holding his jaw forward just so they could bag him till they arrived. I think back and it is such a blessing to know there are so many people that we may never even know that have a huge impact in our son’s life and him being alive today.
After the flight to Albuquerque three hours away they began running tests, an EKG, an ultrasound, and sending blood work off all before we got there. Once we arrived, the doctor told us that he had a coarctation of the aorta which is a narrowing in the aorta causing there to not be enough blood flow to the lower half of the body. They immediately started him on Prostaglandins (PGE) to keep his PDA open so he’s able to get the blood flow to his lower half. She also said they thought he may have a chromosome disorder called Trisomy 13 based off of the different abnormalities he had but wouldn’t know for sure until the FISH test and full chromosome test were back which would probably take a few days. She continued to tell us we wouldn’t be able to know our plan of action would be until those tests were back. After that meeting I was finally able to see my baby boy after being away from him 14+ hours. I immediately thanked God for getting him here and stable. Looking down at him hooked up to a ventilator, IV’s, and monitors, all I wanted to do was pick him up and hold him and tell him everything was going to be ok even though in my heart I wasn’t sure myself.
That day we decided from then on there we would stay positive and get him any and all help that he needed no matter what it took.On Wednesday afternoon, the geneticist Dr. Accie called and said the FISH was in and he wanted to speak with us. He said that it did test positive for Trisomy 13. As he explained it to us and what the statistical outcome of Trisomy 13 was, most children don’t make it through their first week of life and a lot of times pass before even being born, we were in shock. As soon as I heard him say he may have a week maybe two and that only 5% of them make it to their 1st birthday. I broke down. As Josh stood by holding me, Dr. Accie said even though he tested positive for Trisomy 13, we wouldn’t know for sure if he had the full or partial. When he left the room we both were in shock and broke down. We got on our knees praying for the Lord to work a miracle.
There are no words to describe the feeling you have and the pain that overwhelms you of the thought of losing your child and not being able to fix it or do anything about it. From the beginning, we knew He was in the greatest Physicians hands and we prayed the Lord would do his will. We prayed for strength to handle whatever the outcome may be. We prayed and gave Dominic to the Lord and trust that He knew what was best and for Him to give us peace. The next afternoon (Thursday), our doctor came in and told us the full chromosome test was back and it showed he has full Trisomy 13. By that time, the Lord had already given us peace and we knew He would take care of him. Our doctor told us now that surgery was out of the question, he probably wouldn’t last through the week and we should really consider weaning him off of his support and just enjoy what few moments we had left with him. As she explained what the geneticist had told us the day before, she paused and asked us if we fully understood everything that was going on with Dominic because we were so calm. We told her that we prayed and asked God for peace and trusted that God was in control. After she left, we asked the Lord to show us what we should do as far as his support that he was on and we didn’t feel peace about taking him off. From the beginning, once he was stable, Dominic was never in any kind of distress or did he ever need any pain medicine. Yes, he was having a difficult time breathing at first but once he was intubated, he was stable and has remained stable.
After a month and half of constantly fighting with doctors for the surgeries Dominic needed in order to live, the doctor came into his room and told us that she was going to do everything in her power to get Dominic the care he needed and that we could count on her to be our advocate! She said, “When a patient has showed themselves to be hardy and continued to fight like Dominic has, we owe it to him to give him whatever help he needed. After all, he’s done the hard part already and that’s fight to be here.” We were in complete shock! We know there was no way to explain what had happened in those few weeks other than God changing her mind and softening her heart! She said she also had talk with the UNM Children’s hospital in the city and they had agreed to evaluate him to see if he would be a candidate for a tracheostomy. They didn’t promise anything but that was a step! It was brought up to the heart surgeon again to see if he would be willing to changed the conditions of heart surgery to if he had a trach (a secure airway) and were ok with going home on a vent, if he would perform Dominic’s surgery. HE SAID YES!
After recovery time for Dominic after 3 surgeries over the course of a month was amazing, the doctors could not believe how well did one surgery after the other. The next weeks we really focused on getting prepared and trained to go home. On November 5, 2012 after 91 days in the hospital we finally were able to take our son home!
Fast forwarding a couple of years, Dominic is thriving and is now over two years old and defying all odds doctors labeled him with and proving that he is COMPATIBLE WITH LIFE!! We truly feel these children should be given every right to thrive just like anyone and hope that one day the discrimination against children with chromosome abnormalities will be gone. We are so greatly for organization like SOFT that allow our voices and children’s voices to be heard and to show another side to Trisomy.