Remember The One – How It Began
It was the 19th of November, this was going to be the day when we would find out if we were going to have a boy or girl! This was our third time going through this procedure and each time there is a nervous anticipation of finding out the sex of your child. We had been blessed with a little boy Noah, born on August 12th, 2006. We had also been blessed with a little girl two years later. Lily was born on August 16th, 2008. This third child was unexpected and unplanned but we knew that God was at work and the thoughts of 3 stair steps in height and 3 children growing up together close in age would be a blessing. This appointment was originally scheduled November 17th but because of a meeting that I couldn’t miss in Atlanta, Angie changed the appointment to the 19th. As I look back now, I am so thankful that my wife didn’t go to the appointment without me.
This visit to the doctor was just like our first two visits, the waiting room was full of pregnant women waiting to go back and see their future addition on a screen or maybe to find out the sex of their child like we were. I remember Angie’s nurse call out “Angela”, it was that time! It wouldn’t be long before we saw our baby on the screen and found out what we were going to have. The nurse walked us back to the last room on the right side of the hall. This room will be stuck in my mind forever. The nurse came in and did her normal checks of our baby with ultrasound. After a few minutes, she asked us if we wanted to find out the sex of our child and or course, we told her YES!! She asked us how many children we had and realized quickly that this baby would determine who ruled our house, guys or girls! It was only a few seconds until the nurse quickly typed “it’s a boy” on the ultrasound images and printed them off for us to keep. She told us that Doctor Rosemond would be in shortly and walked out of the room. Hogan was the name we had chosen if we were going to have a boy, while Kaytie would have been our girl’s name. We had chosen these first names and the middle name “Sayer” to honor both of our mothers. Hogan was my mother’s name while Sayer was Angie’s mothers name.
We were both excited about having another boy and I had already started thinking about Hogan and Noah hanging out together, I was daydreaming about how neat it would be for just “us guys” to take in some games together and do “guy stuff”. I would have been just as happy to have a girl, but having another boy had just been declared so my mind took off in that direction! I even sent a message to a friend of mine while waiting on the doctor to enter the room letting him know we had another “draft pick” coming. We were both so excited about having another boy that would introduce himself to us in April of 2010.
It wasn’t long before Dr. Rosemond entered the room and said his normal hello’s to us and quickly go to work on his measurements and analysis of Hogan. After a few minutes, I started thinking it was taking him longer than normal but sat quietly letting the doctor do his thing. Dr. Rosemond did make that statement that he was concentrating and this was the reason he wasn’t talking to us. I thought that was strange but didn’t really assume there were any problems. I wanted him to hurry so that I could get to a tennis match that I had scheduled for later that day. It was actually about that time that I later found out Angie knew something might be wrong. Her medical background helped her to notice that Dr. Rosemond kept focusing on Hogan’s heart and his brain. It was about 20 minutes into his studying of the ultrasound that Dr.Rosemond stood up and said “there are some things that I need to tell you”. I will never, ever forget that feeling, that moment or the visual. I could feel my heart drop to my ankles and a cold sweat hit me. I looked at Angie and noticed tears streaming down her face. It was at that moment I didn’t see my wife at her current age but I saw her as a little girl that was hurting. I remember sitting there looking at her laying on that table thinking that Angie didn’t deserve this at all. I jumped up to hold her arm and hear what Dr.Rosemond had to say next. He went on to say that our baby had shown many things that concerned him. He went through the different characteristics of cysts on the brain, a hole in his heart to many other abnormalities. We were both in shock. He requested that Angie have an amniocentesis done to see if Hogan had downs syndrome. He also mentioned that the amniocentesis would also check for two other conditions but I really didn’t pay them much attention because our conversation had only been about the probability of downs syndrome. I asked Dr. Rosemondwhat he thought the chance of Hogan having downs syndrome was from what he had seen on the ultrasound and he said “60%”. Dr. Rosemond told us that he wished he would be able to get the results back sooner but that since it was already Thursday afternoon, that it would be Monday morning before he got the results. As we walked out of the room he told us that it would probably be the longest weekend of our lives.
It was a long weekend but we prayed and tried to keep out minds around the fact that our baby had a good chance of having downs syndrome. Of course, we knew downs syndrome wasn’t the worst thing by far that our child could have but as all parents do when they become pregnant, we wanted a healthy baby. We both new that God wasn’t going to give us more than we could handle. We also knew that Noah and Lily would be the most incredible big brother and big sister to Hogan if Dr. Rosemond’s assumption was correct.
Monday morning finally came and we both tried to keep everything as normal as possible so Angie took Noah to school while I waited in case the doctor called with the results. When Angie returned she was able to get Lily down for a nap just in time. The phone started to ring at 9:50 and I saw “Athens Maternal” on the caller id. My heart started racing and we both looked at each other to see who would answer. Angie told me to answer as she walked over to sit beside me on our living room sofa. Dr. Rosemond made sure it was me and told me that he had received the results of the test. He said “I was surprised to find out the results of the test showed your baby has a condition called Trisomy 18”. I honestly wasn’t familiar with Trisomy but knew that we didn’t want the other 2 things that the amnio had tested.Trisomy 18 was one of them. Angie had read a little over the weekend but stopped because she didn’t want to worry. The doctor told me that this meant our baby would have major health issues if he made it to birth. He told me that Trisomy 18 was incompatible with life and at best our child would only live a year but more than likely wouldn’t make it long after birth even if he made it to birth. He told us that we had 2 choices. One would be to abort and the other would be to continue down the road as a normal birth and see what happened. He also told us that there as a chance that our baby would have “Mosaic” Trisomy 18 which would give us a better chance for a live birth. We found out a week later that Hogan didn’t have Mosaic Trisomy 18 but that hisTrisomy was “full blown”. Hogan was one of the “1’s”. He was a one of 5000 or 8000 depending on which research you follow.
Our prayers were answered with a live birth on Good Friday, April the 2nd, 2010. Hogan lived for 16 days. He passed away in our arms early Sunday morning on April 18th. He changed our lives forever. I believe we were chosen to have this special little boy. He only weighed 3 lbs. 3 oz. at birth. Hogan had more of an impact in his days on earth then I have had over 38 years. Remembertheone.org was inspired by Hogan’s life.
Originally, we started a website called Hogan’s Heroes. Hogan’s Hero’s motto was “remembering the ones”. This motto “remembering the ones” is referring to the statistical numbers that a parent is given during the pregnancy journey. There are numbers like chance of “x” is 1 in 150, or “y” is 1 in 1000, or “z” is 1 in 5000 etc. etc. I know I didn’t really think about the “ones” until Hogan was diagnosed with Trisomy 18. Hogan was a “one”. I want to remember the “one” in the statistic. My wife and I have a vision that we hope will help make the lives of the “ones” in our lives a little easier. This new website that has been created is called “RemembertheOne.org”. The mission is to enable a family to build a “journey page” that will enable easy communication with friends and family members. The “journey page” get’s its name because everyone in life is on their own journey. There will also be groups that will enable someone to communicate with others that are fighting a similar battle on their journey. The calendar on each individual journey page will allow someone to post their important dates or upcoming events. For instance, if you have chemo treatment on November the 15th, you could put this event on your calendar and friends, family etc. who you allow to follow your journey page could choose to be notified by email and will be able to send you encouragement, pray for you, send you flowers, or do whatever you are led to do.
We hope this website is a blessing to those that use it.
Kip and Angie Dominy