July 2, 2012 has forever changed our lives. This seems an obvious statement to any who have had children, but our experience was different than a majority of births out there. Ours was both joyful and heartbreaking at the same time. For 9 months my wife and I prayed for the health of our son, that he would be strong, and be a light for our savior Jesus. Each night before we went to bed we prayed that God would use our sons life to reach those who don’t know about him.
I can now say that he most certainly has done just that, but in a way that was most unexpected. It reminds me to be cautious about what I pray for because it just might be answered in a way that I didn’t see coming! It taught me to be prepared to serve the Lord however it is he calls me to, and be ready for whatever circumstances that it surrounds.
The day Ethan was born was interesting from the start, but to get a full picture I want to go back to July 1st, my wife’s birthday. We had traveled from Conway to Sherwood, about a 45 minute drive, to celebrate Natalie’s birthday. She was having pain that we thought most likely was just due to a uti as Ethan was only 36 weeks along. Natalie has had several uti’s by this point and we just thought this was a rather bad one. We finished celebrating my wife’s birthday and drove back to our house, and this is when we began to suspect something might be amiss. Granted I didn’t think she was in labor, and we will get to more on that later. Every time we hit a small bump in the road Natalie would groan with pain. I thought to myself man that is one heck of a uti we had better get her to the Doctor tomorrow morning asap. We got home and promptly went to bed. Natalie was having quite a bit of pain still so I slept in our spare bedroom so that she could have free reign of our bathroom, and bedroom if she needed it. At one point she comes in saying “I’m hurting really bad”, and me being the brilliant nurse that I am said “It’ll be ok sweetie we are going to the doctor in the morning” not realizing that she was in labor! In my defense we had already made at least 1-2 trips that week to labor and delivery suspecting that she was in labor.
I believe that later that night Natalie’s water broke, but again we attributed this to Natalie having a uti and not her water breaking. I think even Natalie would agree that her description of her labor pains did not subscribe to typical labor pains. We got up early the next morning, or rather I did as Natalie informs me that she didn’t really sleep, and went to chick fila and got us some breakfast and proceeded up to the hospital. Fast forward an hour or 2 and Natalie is now in a room and we are waiting on the Doctor to come in and check her. As soon as the doctor walks through the door she notices Natalie looks pretty rough and decides to check her to see if she is dilated. Come to find out at this point Natalie is 6 cm dilated and we will be having our healthy baby boy today!
Words cannot describe the excitement we had. We had waited 36 weeks to meet our child. All our ultrasounds showed Ethan would be healthy and by all means what we experienced in the pregnancy did nothing to change that. We were so excited and called our parents and texted our siblings that there would be the first Grandchild in our family today July 2, 2012.
Natalie got settled in and got her epidural and finally rested for about an hour or 2 before having to start pushing. By this time my parents and Natalie’s parents are at the hospital and our siblings are making their way to Conway to be present for the baby’s arrival! At 7pm Natalie begins to push, and push and push. I’ll never forget her wanting to panic and stop she wasn’t sure she could do it. She was so tired that she couldn’t stand it any more she hadn’t slept in over 24 hours and was now trying to deliver our son. An hour passes by and Natalie has delivered Ethan. I was expecting to be elated to see my son come out and crying and seemingly healthy with no problems. As soon as I saw Ethan my heart sank into my gut. I thought something didn’t look right. Ethan’s neck was to short and thick, but I quickly chastised myself saying in my head “Its nothing, all babies look weird when they are first born Ethan was just in the birth canal weird that is all”. So I kept trying to reassure myself that nothing was “wrong” with Ethan.
The Nurses within the delivery room quickly took Ethan away to do his cleaning and apgar scoring; however, I noticed they were surrounding him to much, blocking my view for slightly to long, and talking to each other quickly and quietly. I walk over to them and ask if everything is ok, “Is Ethan alright”. They quickly, almost to quickly, assure me that Ethan is fine they are just cleaning him. So I snap a quick picture of him and text it to my family saying “Ethan is here!” all the while thinking he doesn’t look “right”.
I walk back to Natalie and show her Ethan’s picture and comfort her while she rests. The rest of the evening is all jumbled together so if I get the sequence of events out of order I apologize. Next we let our parents come back to get a quick look at Ethan, and after they leave I walk out to go get our siblings to see Ethan for the first time in person.
When I got back to the room I entered first to make sure all was ok and Natalie was decent. As soon as I walked through the door my world shattered, I saw a pediatrician sitting on a chair, Natalie crying, and I thought “Ethan is dead, there was something wrong, I have lost my son… I didn’t even get to know him or feed him” I stop our siblings from coming in and told them to wait outside the door. It wasn’t until later that the Doctor suggest the siblings wait in the waiting room. It feels like an eternity walking to Natalie’s bed, sitting down, and letting the Doctor deliver the news I surely thought meant my son wasn’t alive.
The Doctor looks at us calm, but sad and begins to say “I am sorry to tell you this, but I think there is a 50% chance that your son has Down Syndrome…..You can yell at me, cuss me, if you want I understand. I am sorry to bring this news to you. We are going to run some tests, and this could take several days to get back and know for sure. Ethan has some of the physical characteristics, but not all for Down Syndrome I am hopeful he doesn’t have Down Syndrome”
Needless to say Natalie and I were utterly devastated. We didn’t know what that meant for our child. We never got a report that something looked wrong with him on ultrasound, and that he may have a disorder that in our current frame of thought would doom him to a life of inadequacy and loneliness. We wept for him, for us, and for the child we thought we had. We lost the idea of a healthy child that would grow up in our minds “normal”, no challenges, and all the friends in the world. This is the thought, the idea, that we lost and it was a devastating loss. It felt like the loss of our child. So we cried for what seemed like hours, but was actually only a few minutes. After we collected ourselves I knew I would need to go and tell our families what we were just told.
I made sure Natalie was ok for me to leave and talk with our family, and left for the waiting room. I kept wondering what I would say, how I would keep my composure, and what the reaction would be. I walked out and saw all our family waiting. I walked up to them and just fumbled it out “The Doctor thinks Ethan could have Down Syndrome.” The effect was immediate, everyone was shocked, everyone was sad, and everyone was worried. I knew this would be the reaction, and I thought I had prepared myself. I was simply in shock or I would have broken down right then.
I excuse myself back to the room, and wait for Ethan to be brought back to us. After we finally get to see him again we prepare to let the family come back. Once back everyone made an effort to dote of Ethan, and try not to mention the Elephant in the room. They made sure to show they loved him no matter the challenges that he would come to face, and smiled, laughed, and took so many pictures. They were so happy to see him. It made me feel that everything just might be ok.
I walked down with my parents and siblings so I could get out of the hospital for a minute. We got to their car and I just started crying and asked them “who is going to watch over him when we die, who will be his friends, what is his life going to look like?” There were of course reassurances but to me there were no answers.
After everyone had seen him and dispersed back home we decided to try and get some sleep. We had Ethan at our bedside, and lights off. At this point all was quiet but Ethan. I kept hearing him spit up, and I knew that this wasn’t normal but I thought maybe it won’t keep happening. It did Ethan continued to spit up bile. I finally decided that we should call the nurse and tell her what was going on. By this time it is nearly 10 o clock at night, and they took Ethan for an Xray of his stomach. He was gone for nearly an hour when the Pediatrician came back a second time and I knew there was no escaping it. The Pediatrician sat down again and said “I think Ethan has duodenal atresia which means his stomach is either not attached to his intestines or there is a membrane separating the stomach from the intestines. We cannot treat that at our hospital, and I have called Arkansas Children’s Hospital to come and get Ethan and they will most likely need to perform surgery. When the physical Characteristics and duodenal atresia are present together it is near 100% chance that Down Syndrome is present as well. I am now certain that Ethan has down syndrome. We will of course be sending off the blood studies to confirm it but I do believe that Ethan has Down Syndrome. The med flight team for children’s will bring Ethan to the room before he needs to depart, and once he arrives at Children’s the attending NICU Doctor will call and update you on Ethan’s status and answer any questions you might have.”
He again apologized and left, and we were left alone knowing soon our son will be at Children’s away from us, and away from anyone who could care for him for the time being. It was only a few minutes 10 to 15 tops before ACH flight team arrived with Ethan in our room and I asked if my wife could please hold Ethan just 1 more time before he was flown to ACH. I am so thankful to the flight nurse because they unhooked Ethan from all the monitors and brought him to Natalie to hold for a few fleeting minutes while they prepared the paperwork to go.
They informed us that Ethan would be inflight for about 15 minutes and that the Doctor would call just as soon as he gets settled into his bed. They then took Ethan and left leaving us feeling alone. I encouraged Natalie to try and get some sleep I would let her know when they called, because by this point Natalie had not slept in almost 36 hours but she wanted to wait until she heard from ACH.
I called my parents and asked if they couldn’t come back up to the hospital and stay with us until we hear from ACH and so they did. They prayed with us and when the doctor called they left to give us privacy. The NICU doctor informed us that Ethan had made it to the hospital safe and sound, was doing well, and did almost 100% certainly have Down Syndrome. He delivered all this news with kindness which I am thankful for. He then went on to say “Ethan will need to have surgery to repair his stomach so he can begin to get nutrition into his body. Without this repair then there is no way he can get food. The surgeon will call in the morning to go over plans for surgery”
After the call with the doctor we were finally able to lay down. I encouraged Natalie to try her best to sleep, but even so I could hear her crying every once in a while. I lay awake the whole night wondering if it was my fault. Wondering “Is God punishing me for something I did? Why is this happening to us? Haven’t we been through enough?” I asked all these questions all night long. Finally around 5 am the obstetrician comes in and says that she is sorry for the news, and that she is going to discharge us early so we can get to Children’s as quickly as possible. I knew that Natalie hadn’t slept any and that someone should be with Ethan while I took Natalie home to rest. So I called Natalie’s parents and asked that they please go be with Ethan until we can get there as I needed to get Natalie home to sleep for a few hours.
After being discharged from the labor and delivery unit, we went home and got showered up and laid down to try and sleep while we wait to hear from the surgeon. Once completely alone in the safety of our home Natalie and I hugged and simply cried for a solid 5 minutes. The previous night was just to much to take in, and so we cried. We didn’t talk or reassure each other we simply cried, and after we let go of all that built up emotions Natalie was finally able to sleep, and I felt like the mourning period was over and we could be hopeful for a change. It seemed a turning point for us and our view on Ethan’s so called “problem”. I was so relieved I couldn’t sleep so I left Natalie in our room and went out to the living room and watched TV until the surgeon called.
The surgeon called to get consent to do a surgical repair of a duodenal atresia repair and also informed us that Ethan had a medium to large Ventral Septal Defect in his heart, but they felt they could still do his gastric surgery safely and it was important enough that they needed to proceed on with his surgery so I gave consent over the phone for his surgery and felt some comfort knowing that Natalie’s parents would be with Ethan while they took him to surgery and we would be there when he was done.
AFTER HIS FIRST SURGERY
As we all know by this point Ethan made it through his surgery fine, spent 2 weeks on the ventilator post op during which point he earned a flat spot on his head that would require a helmet to fix, and we found out the day before he was discharged that the “medium” sized hole in his heart was actually rather large, and there was also a atrial septal defect that would probably need surgical repair in the future. It turns out at 6 months old Ethan would undergo extensive open heart surgery to repair not a Atrial septal defect and a ventricular septal defect but a Atrioventricular canal defect that took 6 hours to repair.
Ethan was only in the hospital for 1 week after this, but the real challenge was still ahead with the flu which Ethan barely made it through. If Ethan had gotten the Flu 9 week earlier he would have died. The only reason he has done as well as he has was because he was a heart baby and his heart was repaired. If he had not been used to lower oxygenation things would have been a lot worse than they were. We were so very close to loosing him, and we are so thankful that God timed it just right so that Ethan could survive!
This post is one of the hardest ones I have ever written because it reminds me of the hopelessness and loss we felt on the night that Ethan was born. We were so ignorant of what true blessing Ethan would be in our lives. We have come to understand Down Syndrome better than we every could had we not had a child with it. It is normal to feel utter devastation when you get a new diagnosis of DS and have no idea what is out there. There is so much community support present now that we have no fear that Ethan will have no friends, the developmental care Ethan receives is top notch, and Ethan himself is the most amazing, driven and talented child I have ever laid eyes on.
Nothing has come easy for our son. His very life has been put into jeopardy, he struggles with what would be easy for us physically, and he struggles to talk. Yes all these things are difficulties that he has to overcome. He may cry when we make him work on something he struggles with, but he never stops working towards it, he never gets angry at his challenges. He laughs and moves on, and when he gets it he gets it. He isn’t worried by what he can’t do, but enjoys all that he can! He is stronger than any I have known. He is so full of love, joy, and kindness even at age 2 and a half it astounds me. I learn from him to love others, and to be better about wanting to persevere even in a situation that seems impossible.
I am so beyond thankful for Ethan being who he is. I wouldn’t change a thing about him. Ethan is who he is, he is not his diagnosis. I encourage everyone to please look at children and people with Down Syndrome as PEOPLE. Don’t look at them and be scared because what you see is Down syndrome people that are so very different from you. That is so wrong, People with Down Syndrome are more alike than they are different. Where Ethan can’t talk and express what he wants with words as easily as a “typically developed” 2 year old Ethan signs what he wants and conveys it just as easily and quickly as anyone else. When he struggles to get something off a shelf because he has trouble walking or crawling he would invent new ways to get there. He is more alike to us than he is different no matter his delays. I am so proud to call him my son. I am so thankful that Ethan is the way he is. I couldn’t ever be happier and more proud of my son. Thank you Jesus for him.
Ethan and his Dad hanging out on one of Ethan’s shorter, less dramatic hospitalizations (aspiration pneumonia, one night)[/caption]
I also wrote this post for you Father’s out there who are hearing this diagnosis for the first time. I want you to know its ok to be angry with God, its ok to be devastated, and its ok to mourn the loss of what you thought you were going to have with a child. However, don’t get lost in this remember that your new child will bring you just as much joy and pride as any other child could or would. Take heart in knowing that your child will get to live a mostly normal life! Fall in love with who your child is not what they have.
Ryan (Ethan’s Daddy)
To see Ethan’s Birth Story from his mother’s perspective, click here.