“God made him and he was mine.”
Jared Alexander Carroll, Trisomy 13, 1/1/1989 to 7/26/1989, Moultrie, GA
In 1988, I found out I was pregnant with my second child. As the months went by, it seemed like a perfectly normal pregnancy. I went in for monthly visits, had ultrasounds routinely, and all the other stuff that goes along with being pregnant. Then…..
1989 was one of the worst years, or so I felt at the time, of my life.
At 9 am the morning of Jan 1, 1989, my water broke. My sister, Kelli and brother in law picked me up and drove like mad to Hahira with me pushing in the car the whole way. Jared was born at 9:32am at Smith Hospital. He was having some difficulties, so they didn’t give him to me right then. In what seemed like eternity to me, they finally brought Jared to my room. In my eyes, Jared was beautiful. He was very small, and from the first moments of his little life, the nurses had been having trouble keeping his oxygen level up to where it should be. As a new mother, I could feel something wasn’t right…you just feel it… shortly after Jared was born, but my doctor was away on vacation, and the doctor on call was very vague about any questions we had. After a few days in the hospital, my doctor was back and he came in and talked to us as my heart just sank. There were several things he was concerned about, but felt we needed to be somewhere they could do more testing. We were sent straight to Egleston in Atlanta from the hospital in Hahira. To be very honest, those first few days seemed like I was in a dream…not my life, someone else’s.
At Egleston, they started with individual doctors that specialist in eyes, stomach, heart, etc. I was on such a pity party, not understanding why God was doing this to me….I couldn’t get past that. But, I would try to put to be optimistic and look for the positive things, I would think well…ok, he has a stomach problem, that can be fixed…or well, its his heart, we’ll get that fixed. After a few days of testing for everything possible, our nurse came in and brought us in a room to talk to a geneticist who had gotten the results from all of these doctors and then, he had come up with a diagnosis…. Jared was born with a chromosome disorder, Trisomy 13 or its also called Pateau syndrome. TRISOMY 13…Trisomy 13? I had never heard of that before in my life? It blew me away, there were only around 1400 diagnosed cases of Trisomy 13 in the entire United States!! So then, he explained….ever so bluntly. With Trisomy 13, there is nothing that can be done; he will not reach 1 month of age. I felt like someone had just punched me in the stomach.
The best way I know to describe Trisomy 13 is liking it to Trisomy 21 which is Down’s Syndrome. At the time of conception, the chromosomes do not split as they are supposed to. With down’s syndrome, a person has too many of the chromosome 21. With Trisomy 13, Jared had too many of the chromosome number 13. Jared had Full Trisomy 13…there are such disorders as Partial trisomy 13. With full trisomy 13, it is normally not genetic unlike partial which normally is. However, they tested both of us to make sure. Those blood tests turned out normal and there were no genetic issues.
The staff at Egleston was so attentive until we learned that Jared had Trisomy 13. At that point, we were put in a room with not monitors or anything. We didn’t realize until later on down the road that they felt there was nothing left they could do.
For any of you that do not know, Jared didn’t have some of the typical physical issues that normally accompany Trisomy 13 (for instance, cleft palate and cleft lip). However, he had many, many problems. He had a heart defect called Tetrology of Fallot and is the biggest cause of Blue Baby Syndrome. Jared looked bluish most of the time. He had two hernias in his lower groin area and his genitals were tiny. The most noticeable physical defect was his eye; his left eye did not develop in size or quality at all; it is called Microphthalmia which means tiny eye. His eye socket was formed but there was a cyst that grew in the bottom part of the eyeball socket.
I once thought we could have surgery done on each of these problems and he would be as good as new, but there was not a doctor in the US that would perform surgery. If he had made it through surgery and that is a big if; he would still have Trisomy 13 which is again, fatal. I guess looking back, I should have realized that this child of mine was the child that God made him to be for whatever reasons that I could not understand. God made him and he was mine.
Again, while I was there staying at the hospital with Jared, I felt like I was just in a fog for lack of any other way to put it. It just didn’t seem real that all of this was happening. People were calling to check on us, and I couldn’t even speak to anyone. When I tried, I just cried, so I just didn’t even bother. So, when people asked for me, they were told that I wasn’t able to come to the phone….I just couldn’t.
I remember my mom and dad bringing my son, Daniel, who was then 4 ½ years old up to the hospital to see us during our stay at Egleston. Mama was sick and couldn’t come in there with Jared which broke her heart. Jared had an IV in his head, and the nurses cut a little cup and put over it to make it look like a cute little party hat to keep from scaring Daniel. My sister, Kelli, was a lifesaver for me, and I owe her so much for keeping me above water by just simply caring for Daniel like he was her own while we were emotionally and physically unable to do so.
Then after a day or two, they sent us home with me scared to death because I had no idea what this meant for me and how I could handle this little baby boy of mine with this fatal disorder. I had been working with Dr. Newborn in Moultrie as receptionist and insurance clerk, but after Jared was diagnosed; I started working with mama in her tax office which was in the mobile home right next door to their house. I did lots of the busy work like the bookkeeping which in 1989…was all done on paper. Thank God for electronics for sure!
When we got home, we phoned specialists and everyone told us the same thing (and we called all over the US)….”the best thing you can do is take him home and let nature take its course”. Are you kidding me? What mama can do that? I was devastated…..just not understanding how God could let this happen. We ended up taking him to Dr. June because of some bleeding; she put Jared in ICU which is where he spent a lot of time throughout his little short life.. My older sister, Cindy, lived in Vegas and flew home as soon as she got the news. While we were there, they gave us all a CPR course because they knew it was something we would need
Did I mention that I thanked God everyday for Dr. June? She researched Trisomy 13 and she knew there was not anything that she could do to make him well, but she sent us home with a heart monitor, and oxygen to help us through the difficult times that she knew we were facing. She set us up with the visiting nurses who came to see Jared two times a week.
During the first month that we had Jared home; we got connected with Green Oaks. They were awesome; I know no other way to describe them. Through a program at Green Oaks, they provided every ounce of Jared’s special formula he had to have, and every diaper that we used. They paid respite care for me to allow me to go to the grocery store or run little errands a couple of times each week.
Before Green Oaks, I would take Jared to town with me and I was still in “angry” mode. People would stare and although I know some of them were simply staring out of concern; many people just flat out started. That made me more angry. I had people ask me, “why is is so blue?” Again, can you say angry????
Of course, we learned during this first month that his cry was so soft and faint, like a newborn kitten. I was a heavy sleeper, but his little soft cry would wake me up instantly. Isn’t amazing how God works things? We learned that he would stop breathing several times in one day and that our CPR course was certainly not in vain. CPR became part of our daily routine.
On Thursday morning, February 9, 1989…I was home with Jared. Daniel was in school. I’ll never forget when someone came to my door and told me they had found my mother and she wasn’t breathing. I called Green Oaks and two of the ladies came right on to stay with Jared (he was on oxygen and a monitor). I rushed to the hospital and mama was gone, I had lost my best friend. How quickly a life can be taken. Again, I’m thinking….Why Me God? Why Me? I’m not a bad person. But, we had to call Cindy again and she flew right home.
I don’t have to tell any of you that knew my mama, “she was the best!” After the funeral, and we had to adjust with our lives without the “glue that held us all together”, it was tough. Aren’t mamas that really? In most cases, mamas are the ones who try to keep everyone grounded and getting along and all sorts of things.
Dad, Aunt Eloise, and I took the refresher H&R Block tax course, so we could finish the tax returns of the clients that wanted us to. I had people continue to make appointments with me to do their taxes. We were staying with dad, so every morning; I would get up and get Daniel off to school. Then, I would load up all of Jared’s monitors, diapers, bottles, and oxygen in a little wagon and go next door to do taxes. I will never forget one appointment I had one afternoon with a couple. Jared’s monitor went off as I was doing their taxes. I excused myself and performed CPR then, came and sat back down and finished their taxes. They both sat in shock the rest of the appointment. Looking back, I probably should have rescheduled them because I’m not sure they trusted that I was stable enough to finish up that day. Lol. It was God that got me through those times and it had just become a part of our lives; it was normalcy to me.
Since Green Oaks paid for respite care, Jared would stay a couple of hours 2 times a week with my granny, God bless her. Everyone was pretty much afraid to keep Jared, because he would stop breathing quite often. I guess if he had not been mine, I would’ve been scared, too. But my grandmother was a Christian woman and her exact words were, “If God takes Jared while he is with me, I know that is God’s plan.” And she meant that and she believed it. She was very much a part of my strength during that time and Jared was a big part of hers. She had lost a child, my mom, …Jared was a lifeline I think,..for all of us really.
Oh, and my Daniel….such a big boy during that time…matured way beyond his years. He was a protective big brother. He was quick to let people know there was no smoking around his baby brother and he meant it.
With all of this going on in my life, I made no time to take care of my health and go back to the doctor for birth control or anything. So, I quickly got pregnant again. When I went for my very first OB appointment with Dr. Trotter, I don’t remember the receptionist name but she very quickly suggested that an abortion is what I needed to do. What??? Really?? Of course, no was my answer so they scheduled an amniocentesis in Augusta for the next month. After the test in Augusta…..then we wait for results for what seemed like an eternity.
As time passed, Jared was hospitalized yet again in ICU for what seemed like months. Me and my dad were spending many nights and days at the ICU with Jared. I thank God for my dad. If it had not been for him, I’m not sure what I would’ve done. I stayed all day at the hospital and he relieved me and stayed at night. Anyone who has had to stay at the hospital knows how exhausting that can be.
They were sticking him every day for labs, and we were able to bottle feed. We had to use the feeding tube run down his throat into his stomach. His little lips were so chapped and dry. He had contracted a yeast infection in his blood stream from the continuous IV antibiotics. We made a decision. No more labs, and we wanted to feed him by mouth. If he was going to die; we wanted him to die comfortably. So, Dr. June sent us home, but telling us if something happened at home…to call her first and she would meet us at the ER.
On July 25, 1989, I received a call from Dr. Trotter’s office letting me know I was carrying a healthy baby girl!!!!! I was beyond overjoyed! I left Jared with dad for a few minutes to run down and tell my best friend, Kathryn, the good news! As God would have it, she wasn’t home and when I got back, Dad was pale looking. Jared had stopped breathing. I performed CPR as I had done many times a day since Jan 1, 1989. I went to bed that night expecting the most peaceful night I’d had in a while. Sometime after midnight, Jared’s monitor went off; I woke up and did CPR and he started breathing again. Approx. an hour later, the monitor went off again; I performed CPR and laid back down. I know you are probably thinking….how in this world could you possibly lay back down after this? The truth is this was such a normal part of our lives now, nothing really seemed abnormal for Jared. Again, what seemed like a few minutes later, the monitor went off again? I woke up and performed CPR; his body seemed not as warm as before, but I felt some breaths. This time, for the life of me….other than sheer exhaustion, I’m not sure why I allowed myself to fall back asleep, but when the monitor went off again….the CPR did not work! I cried, I yelled, I screamed…..why? Why? Why?
Dr. June met us as at the ER when I called her, just as she said she would. She told me that she could tell that I had been working on him (CPR) for quite some time. She prayed with us and cried with us. I was of course, still thinking, this is not real; it had to be a dream.
Things that I did not see then, I can see clearly now. We were given this special little boy for a reason. He blessed our life and the life of everyone who came in contact with him. Jared would be 26 years old today, and I know he is whole and in Heaven with Jesus. I saw a video recently of another couple with a baby born with Trisomy 13 who died within days after his birth. And the words of his mom and dad made me smile, “He will never have to get his heart broken for the first time, and he will never get that first spanking; all he will ever have known is love.” God bless.
God has blessed me with two beautiful kids, two stepkids, two bonus kids (I’m lucky to have), and seven of the most beautiful grandchildren on earth! I’ve learned its okay to remember and reflect on my past, but God wants me to live on and be closer to him….learn from the things we experience through His grace and his mercy. Jared will forever be in all of our hearts until we meet again.