Tatum’s story begins in August, 2009. This is when I found out I was pregnant. Of course, at only a few weeks into pregnancy, it was very exciting. Expecting a new baby, wondering if it will be a boy or girl and just regular fun pregnancy things. At that point in my life, I had a 2 year old daughter already. Her name is Miley. I thought I knew what I was getting myself and family into with this wonderful pregnancy. Sometimes you don’t get what you want but you get what you need … and that was Tatum. In November of 2009, I had a 3D ultrasound appointment to find out the sex of the baby and to make sure everything was okay and the baby was healthy. This was a ‘normal’ appointment, and most expecting mothers have an appointment like this one. I can remember that day so vividly. At first glance, the ultra sound tech told me I was having a baby girl. Mother’s intuition had me already knowing Tatum was a girl. I was so excited to be having another girl.
After telling us this great news, the tech told me that she needed to get a doctor because something didn’t look right on my ultrasound, but at this point she couldn’t tell me what. The doctor had looked at the pictures and came into the room to tell me that my baby had fluid in the back of her neck, a spot in her heart, and 2 vessel umbilical cord. The doctor then proceeded to tell me that because of these 3 finding, my baby had a 10-30% chance of having Down or Turner Syndrome. Knowing this information, I figured that the odds were in my favor and I refused the amniocentesis. The next day, I went for an appointment with my regular OBGYN, who at this point, with this information, talked me into some routine blood work. A couple days after that, I had the blood drawn so they could test that. Within the next few days, we got a call from a geneticist. She told me that, with this new information from my blood work, there was no chance of Down or Turner syndrome. She then had said it looks like a 50% chance of trisomy 18. Mind you I had only had one child before this with no complications at all so I had no clue what trisomy 18 was.
Once again, I went back to my regular OBGYN and at this point he strongly suggested the amniocentesis. December came and it was at the beginning of the month that I went in for my amniocentesis. We were told that the results take about 3-5 days to get back. Those turned out to be about 4 days and they were straight up hell. The feelings and emotions where terrible…. thinking there is only a 50% chance that my baby was going to live. I remember just sitting up all night crying, and there was nothing I could do or did do that caused this.
When the day came, the geneticist called and said “Good news, it’s not trisomy 18”. Those were the words I wanted to hear! Then she said “It’s actually this rare disorder called Ring 18” … I asked her, “Well, what is Ring 18?” And she went on to tell me that she had no idea and she had never heard of it before. So like any person these days, what do I do: Google it. I was stunned that there was literally almost nothing on Ring 18 on Google. I found the Chromosome 18 website and researched that site day in and day out. I thought I was going crazy. My pregnancy went on as high risk and I had to go to special doctors and have all kinds of testing done for the duration of my pregnancy. Not one doctor I had met had ever heard of or seen Ring 18 before and could tell me nothing.
Finally, in I think February 2010, I joined the yahoo group of Ring 18 parents. Of the few of us that there are, no 2 cases are alike, and all the other parents had the same troubles I was running into. No doctor knew anything about Ring 18. I have made some great friends from the Ring 18 group and it was the support that I needed. April 9, 2010 was my scheduled caesarean section. Once I was in the hospital, my high risk doctor wanted to do one last ultrasound. In this last ultrasound, there was low fluid. That was reason enough to have my c-section a week early. I went in, and the c-section went fine. I remember being on the table and asking, “Why isn’t she crying” and they rushed Tatum off to the NICU. Once I was awake enough and somewhat coherent I was brought into the NICU to see my daughter Tatum for the first time. She was 6lbs 8oz and 17 inches long. I remember thinking that she was an okay sized baby. Not too small. In fact Tatum was the largest baby in the NICU at that time.
After 3 days I was discharged, but Tatum was still in the NICU. Tatum had 2 clubbed feet and was tongue tied. Day after day, we began to find more and more out about Tatum. We slowly began our journey with a special little baby. Tatum had a VSD (ventricular septal defect) and an ASD (atrial septal defect) which were 2 holes in the heart. Tatum also had pulmonary stenosis. Pulmonary stenosis happens when the pulmonary valve is found between the right ventricle and the pulmonary artery. It has three leaflets that function like a one-way door, allowing blood to flow forward into the pulmonary artery, but not backward into the right ventricle. And we also found out about a patent ductus arteriosus (PDA) this allows a portion of the oxygenated blood from the left heart to flow back to the lungs by flowing from the aorta (which has higher pressure) to the pulmonary artery. This is what we had known so far………Little did we know we would we would be staying longer than expected in the hospital.
Tatum stayed at her birth hospital for 2 weeks. I was with Tatum one day when another cardiologist came over to look at Tatum. He looked up and said we need to send her to Boston. There is nothing we can do for her here. Within 1 hour, Tatum was med-flown to Children’s Hospital in Boston Massachusetts. My family and I rushed down and followed her to Children’s Hospital. Once there, Tatum ended up staying for about 4 weeks. Within a few days of being there, they did her PDA ligation and she did great! She was gaining weight and breathing so much better! Then, randomly, Tatum began to have strider. Strider is an abnormal , high pitched, musical sound, caused by an obstruction in the trachea or larynx. They took a look at Tatum’s vocal chords and what they saw was that her left vocal chord did not move at all. They also discovered that Tatum had laryngomalacia. This is basically a soft larynx. With these new findings, the doctor’s told us that they are not life threatening and she should grow out of it. Most children do. BUT most children do not have Ring 18.
Of course, everything was a lot harder for Tatum. More time went by in the hospital and Tatum was having some trouble eating. The doctors suggested it was because of her heart, that she did not have the energy to eat a whole feeding. They finally decided to place a g-tube to make feeding better and so Tatum could get bigger to withstand open heart surgery in months to follow. The day finally came! Tatum was discharged! I was so happy and my oldest daughter Miley was thrilled to be going home. Miley is 3 years old now. When we finally came home, Tatum had her g-tube and was also on 2 diuretics to keep fluids from her heart and a multivitamin. Tatum did great at home. I had her clubbed feet cast. And she was seen weekly by her pediatrician. We had a visiting nurse almost daily as well. It was so great having her home and seeing Miley and her bond like sisters should do. Tatum could almost roll over and was very strong. Miley loved holding her.
I brought Tatum in for her immunizations and I noticed her breathing was getting a little heavy and I let the doctor know. He sent her in for an x-ray of her lungs and saw that she had a great amount of fluid in her lungs. She was sent by ambulance to the largest hospital in the area. Once there, Tatum was put on oxygen right away and sent up to the children’s portion of the hospital. We spent about 1 week there and Tatum was not breathing any better, and she had every doctor confused. One morning at rounds the doctors said, “Well, we don’t know what’s wrong with her so we will continue to monitor her.” I was livid! I got the attending doctor and told him to send Tatum to Children’s Hospital Boston NOW! And they did.
Once at Children’s, the cardiologist told us what Tatum had. The plan was to fix the pulmonary stenosis in the cath lab and then go in for open heart surgery to close her VSD and ASD. That way, if her breathing still was poor, they would know that it was not heart related. Then it was the worst… Once Tatum was in the cath lab we waited patiently. The cardiologist came out and asked to speak with me. He them proceeded to say that Tatum had pulmonary vein stenosis. PVS is when the 4 main veins from you heart to your lungs are being deteriorated by bad cells. He told us her lungs would fill up with fluid and slowly she will pass. They have no cure for this and it is indeed fatal. I remember screaming. I was so devastated. To think that no one can save my daughter was absolutely mortifying!
Tatum came out of the cath lab and was on the ventilator for about 4 days. Those days were so scary. No one was sure what her reaction would be coming off the vent. Tatum surprisingly did great. A couple days after that Tatum was breathing with no oxygen and doing okay (for Tatum). Tatum was sent home via ambulance. She was sent on hospice care. Hospice was such a crazy good experience too. Where I live is a very small town and the hospice team here never had a child let alone a baby in there care. They also had never heard of Ring 18. Hospice was great for Tatum. We got home on July 2, 2010 and Tatum had a VERY wonderful month at home with her family. I treated Tatum like a “normal child” because that is what she deserved. Miley did fun things with her and family and friends came to visit and see her. It was almost a false hope seeing Tatum do so well for that month. She smiled and laughed and would roll and kick her feet and just do what a 3-4month old baby should do. Sadly the day came when Tatum couldn’t tolerate food and began throwing up. Her breathing got heavy and she needed oxygen yet again. Tatum’s time was coming.
Tatum passed away in my arms on Aug 4, 2010 at 11:40pm. My beautiful angel looks down on my family and me now. She is missed so much. Tatum is survived by both parents, myself Amanda Duncan and Micheal Roache, her big sister Miley Duncan, her maternal grandmother Pamela Duncan, her maternal great-grandmother Helen Duncan, and her uncle David Duncan and aunt Vicki Bagnell. “God picks his prettiest flowers first”.
Tatum Anna Duncan Roache, my baby angel.
April 9, 2010 – August 4, 2010
