Doctor: …He also has a 1 in 4 chance of heart disease or some sort of heart defect.”
Me (in my head): “Wait? What? Can we slow down here?”
Doctor:…..meet with genetic counselor…”
Me: “Genetic counselor? Down syndrome? Aren’t I too young? Oh, that’s why he questioned how old I was…”
Doctor: “….blood cell test is 99% accurate…. 2 weeks to get results….”
Me: “2 weeks?”
Doctor: “Cardiologist will do echocardiogram….”
Me: “But his heart has sounded and looked perfect up to this point! At least it did 2 weeks ago!”
Doctor: “Any questions?”
Me: Blank stare. I look at Brett. Blank.
Doctor: “Ok. Well, now you will meet with the genetic counselor to ask about your family health history, give you more information about the blood cell test, and make your next appointment.”
Yes, this pretty much sums up my initial reaction to hearing this news, about 2 1/2 weeks ago. Let me start from the beginning….
My second to last blog post was an update on Damon regarding his 32 week ultrasound. On that day, it was a very crazy schedule for my OB, which resulted in me getting the ultrasound, waiting, leaving the office and coming back a couple hours later, waiting, and then finally meeting with my OB. As you may have read, everything looked great, except he was breech. Then, on March 31, I went back to see my OB for my 34 week appointment. When she came in, she immediately apologized for the last appointment. I shook it off like no big deal, but then she goes on to say that she is apologizing because after careful observation at the pics from the ultrasound, she saw something questionable in his bowel. She and the ultrasound tech questioned that Damon had a condition called pyloric stenosis – which is when the pylorus muscle thickens and prevents food from passing from the stomach to the small intestine. She told me that she is referring me to a high-risk OB to get it further checked out. If he has it, he will be required surgery to allow nutrition to pass, or else he would be vomiting over and over.
Two days later on April 2, we meet with a high-risk OB at St. Vincent. We had another ultrasound done to confirm or rule out the pyloric stenosis. Well, Damon was being stubborn. In 2 weeks, from 32 to 34 week gestational, he had moved to the transverse position (his head was pointing towards my hip). And on this day, he just had to choose to be BACK up, rather belly up, so it was hard for the tech to get a good picture of his heart. After several minutes, (and me getting up and moving, practically doing jumping jacks to get him to turn belly up), we had the high-risk OB come in and take a look.
What he confirmed is that Damon does not have pyloric stenosis, but rather a condition called duodenal atresia. It’s similar to pyloric stenosis, however the location is different. There is a thickening of cells in his duodenum (which is the first part of his small intestine) that is causing a blockage, and therefore little or no nutrition will be able to pass through. He will be required to have surgery after birth.
When the doctor first told us the diagnosis, we were prepared for that answer and the solution of surgery. We had 2 days to pray and prepare ourselves with the news of the possibility of surgery and staying in the hospital for some time after birth.
Then…. the conversation at the beginning of this post occurred. The doctor started spouting out statistics, and Brett and I sat there feeling like punching bags. If you click on the link highlighting “duodenal atresia” above, you will read,
“Associated abnormalities have been found in some infants with duodenal atresia…” As you heard the doctor above, 1 in 3 babies with duodenal atresia also have Down Syndrome and about 20% have heart disease. Therefore, to first rule out any genetic disorders, I had a blood cell test done. My blood was immediately drawn and taken to a lab to test for the following genetic disorders: Trisomy 21 (Down syndrome), Trisomy 18, Trisomy 13, Monosomy X, and Triploidy. As you also read, it took 2 weeks to get the results of either “high risk” or “low risk.”
And so the waiting began. The first few hours after leaving the hospital was probably the hardest. We were numb with shock. After all, everything had been going so well and there were no warnings beforehand. Brett called his parents first (while vacationing in Florida), and then we did a 3 way call with my dad, mom, and sister at her house (where Kherington was staying during the OB visit). That’s when I finally let my emotions go. Right away though, I knew and trusted God. I know He is Sovereign. He knew Damon before the foundations of the world. He created him as HE saw fit with the exact egg and exact sperm to come together at the exact time. That gave me comfort. On the phone with my parents I said, “I’m not asking why us? I’m asking why NOT us?” Damon is a gift from God no matter what his condition.
The next 2 weeks were an emotional roller coaster. We told family and close friends. We could FEEL the prayers of our family and friends. Each day got easier, and I knew it was because I was surrounded by God’s peace that passes all understanding. Brett and I prepared ourselves emotionally and mentally (well as much as we possibly could at this point) for the possible news that Damon had Down syndrome. Even though the odds were still for us (2 out of 3 did NOT have Down syndrome), we still did not want to get our hopes up. Our prayer over and over again was the same as Jesus’ in the garden before he was arrested and crucified on the cross,
“Father, if you are willing, take this cup from me; yet not my will, but yours be done.” (Luke 22:42)
We ultimately wanted God’s will for us and Damon. He sees the big picture. We tried to stay focused on eternity. And when you start looking through God’s lens, your perspective starts to change. Our thoughts became, “So what if he has Down syndrome? Why is that such a big problem? Yes, there will be many challenges, but are we more concerned about what people think and not having the perfect American family?”
One day Brett was doing research and came across the statement that people get tested for these genetic disorders and then abort their baby if it comes back high risk. He was flabbergasted. Yes, people do this because they want the perfect baby. The no problems, straight A, go to college, get a good job, marry the right spouse, make money, perfect kid. Would I ever abort my child? NEVER. It’s sin because life starts at conception. However, do I desire that list for my baby? Yes. And one of the big things that God taught me these 2-3 weeks is to Let. It. Go. (and I’m not talking about the theme song from Frozen!)
I’m type A, controlling, organized, need-to-have everything-planned-out-months-in-advance type of person. If I can control my environment and circumstances then I believe life can go so much smoother. I can anticipate change and be prepared. And then we received this news and as Brett and I prayed that the Holy Spirit will teach us through this trial, I knew immediately what He wanted me to hear.
Nope Christina. For one, you can’t do it yourself, and you cannot control it all. The clean house and the obedient toddler among a perfectly organized schedule does not matter in eternity. Pinterest, Facebook ads, and even good intention blogs do not have the answers. There is no such thing as a perfect family. And what IS a perfect American family after all? Who says the family with Down syndrome or William’s syndrome cannot be considered a “perfect” family in our American society? Well, there’s no such thing as perfect. And if there were, we wouldn’t need Jesus and His grace and forgiveness. Let’s stop looking down on others. Let’s stop comparing ourselves to each other. Yes, I’m talking to the Christian families, who probably judge and compare the most. That’s called following the Law and not grace.
Brett and my perspective on special needs children have changed as we have looked through God’s lens. During that waiting period, my love for Damon grew so much and the fact that he possibly had a genetic disorder didn’t change my love. God even loves Him more than I do. God loves ALL people, regardless of their health, race, color, financial status, etc. As my pastor said this Easter morning, “In Christ, there is nothing we can do that would make God love us more, and there is nothing that we have done that will make God love us less.” No matter what sin we have committed, how successful we become, how “perfect” our family is, or how many chromosomes we carry, God is Love and His love never changes.
I’m not going to lie. When I used to see a special needs person, one thought was always, “I’m glad that’s not me or my kid.” C’mon. You know you think that too if you don’t have a child with special needs. Now I see the child in a wheelchair at the children’s museum, and think, “Beautiful. Made in God’s image. God loves her/him. That COULD be my kid, and after all, I’m not in control; God is and He knows best.”
Well, on April 14, I received a call that the blood cell test came back “low risk.” They cannot say 100% no Down syndrome or other genetic disorders, but it is fairly accurate that he does not have Down syndrome. Fortunately, Brett was working from home and I immediately rushed in his arms and told him the news. We both cried and prayed our thanks to God for taking “this cup from us.” Brett was actually more surprised because he really began to wonder if God had a specific plan for our lives where Damon would have Down syndrome. But He is sovereign and for some reason is allowing us to go through this trial and not allow him to have a genetic disorder.
The next day I had another ultrasound and then a pediatric cardiologist performed an echocardiogram. He said that Damon’s heart looked exactly how it should at this point in gestation and did not see anything alarming. Praise the Lord again for the good news. The high risk OB again confirmed the duodenal atresia. He said that he didn’t want to give us false hope that we were completely out of the woods and that there wouldn’t be a disorder or syndrome that would show up after birth, but he did reassure us that our road would be much smoother than a lot of families he sees.
We meet with the pediatric surgeon on Wednesday, April 23. We have so many questions regarding the surgery and will have most answered then. Please pray with us that God will continue to surround us with His peace and that He will make us more like Christ through this process. Our desire is that He will be glorified most.
*I wanted to add a quick statement about my OB who didn’t tell me about the questionable ultrasound picture until my next appointment. When she was apologizing for first missing it and not telling me until that appointment, I immediately told her it was God’s timing in the matter. The day after that ultrasound, Brett and I left for San Antonio to spend the weekend at the Christian Worldview Film Festival. If we had that news, we would have been worried and not had been able to enjoy the weekend as we did. My OB is wonderful, and it gave me another opportunity to give God all the glory.