It had already been an eventful pregnancy that day in August when we got the phone call that would forever change our lives. Just five days earlier we stood in the church that I grew up in and said a final goodbye to my grandfather. It was almost unbearably emotional for me. Partially because I was filled with the hormones that come along with being 7 months pregnant, partially because this was the third grandparent my husband and I lost during this pregnancy and partially because it was so moving to see how many people came to pay their respects to this man who was a pillar of his community and the cornerstone of our family.
By the time I got back to work on Monday, I was emotionally drained but had something great to look forward to. I would be heading back to my specialist the next day which meant I would get another glimpse of this precious baby boy. It was also exciting because the last appointment went so well that the doctor felt we might get "released" at this visit.
To give you the background story, we were referred to our specialist around the 20th week of the pregnancy due to a white spot that appeared on the baby's heart in a routine ultrasound. Just like any other woman who has been pregnant since the age of "Google", I researched these white spots for days before we met the specialist. I found that these spots could be a soft marker for Down syndrome but was comforted to read numerous posts online from other women whose babies had these spots which turned out to be nothing more than calcium deposits and carried no risk to the health of the baby.
When we met the doctor and the genetic counselor who happens to be our next door neighbor, we were told that the spots on our baby's heart were a little larger than they see if it was a typical calcium deposits. We were given a very wide range of possible diagnosis, all of which would require us to wait another two weeks for a follow up visit. We were offered an amniocentesis if we wanted to rule out Down syndrome but our little man was measuring perfectly so the odds of having a complication due to an amnio were actually greater than the odds that he had Downs. I remember Adam saying in that visit, as he had every time we were offered a screening test, that a diagnosis of Down syndrome would never change anything for us so there was no point in testing.
Two weeks later at our follow up visit with the specialist, the spots on the heart had not grown and we were given hope that these could just be calcium deposits after all. We were told to come back in 6 weeks for a last check and if everything looked the same then we would be released.
So here we were walking into that appointment after an emotional weekend feeling like this was going to be the good news we so needed to hear...
After the world's longest ultrasound, Adam had to leave me because he had patients waiting on him at work. The specialist directed me to a consultation room where he explained that the baby had fluid surrounding his lungs which could mean he was in cardiac failure and I needed to drive 3 hours north to Indianapolis where a pediatric cardiologist was expecting me. I didn't even have time to process the severity of the situation because I had to get in touch with Adam, pack a bag, get gas in the van, make arrangements for the girls to get picked up after daycare and get on the road.
The staff at IU Medical and Riley in Indianapolis were simply amazing. We knew that if our baby was suffering some cardiac event, we were in the right place. We were rushed across the campus into a pediatric cardiologist's office. Within minutes of meeting the cardiologist our fears were eased. She felt strongly that that baby's heart was functioning perfectly. She believed that these spots were nothing to be concerned with and sent us on our way to see another team of specialists who were going to try to figure out why the baby had fluid surrounding his lungs. Once we had another ultrasound, we were given the option for an amnio again. This time we felt like we needed to go ahead and proceed with the testing. At this point it was important for the doctors to pinpoint what was going on. If they could rule out things like Down syndrome then they would start looking at other possible causes. We stayed the night in Indianapolis to be monitored after the amniocentesis and were told we could have results back within 48 hours.
I was back to work on Thursday with my phone by my side at all times just waiting for some news, any news so we could move forward with a plan of action. When my phone rang I knew the number was not coming from Indianapolis but coming from my specialist's office here at home. I took a deep breath and walked into a private office at work to hear our fate. The tone in my doctor's voice was very calm and matter-of-fact as he explained to me that the test results were back and they were consistent with Trisomy 21 (Down syndrome). He offered to answer any questions I had and asked me to come in to see the genetic counselor the next day. Then he said something that somehow eased my mind. He said that he has given this news to couples in the past and worried about how they would handle it but he wasn't worried about us. He knew that we were going to be just fine. Sure he could have been just trying to make me feel better, but I believed him because I needed to.
I hung up, grabbed my purse and headed straight out the door of my office. Adam and I had talked that morning and he told me to call him with the news. He had mentally prepared himself for the diagnosis of Down syndrome and was sure he could handle it if I called him to confirm. Now that I had the confirmation myself, I knew this was not something I could tell him over the phone. I pulled up to his office and called inside. He was surprised when I told him that I was in the parking lot. I met him just outside his door and didn't have to say a word. I simply shook my head and he knew and he hugged me tight and let me sob into his chest while I said over and over that I was so sorry. Looking back, that seems like a silly thing to say but at the time I felt a sense of responsibility in it all. As if my body was at fault for creating a baby that was less than perfect.
That night Adam and I mourned for our baby. To me it was as strong as the loss I had experienced less than a week earlier when we buried my grandfather. Later I would find that other parents had these same feelings when given this diagnosis.
I spent the entire evening researching Down syndrome. I wanted to see pictures of newborn babies that had the same diagnosis as my baby. I wanted to know what services were available in our city to help us cope with these new challenges. I wanted to know what health complications we might expect. I searched and read and searched some more until I was so mentally exhausted I had no choice but to sleep. I went to bed with a lump in my throat wondering what I would feel like when I woke up.
With the morning light, I was quite surprised to feel a sense of peace. I had no urge to cry, no feeling of sadness whatsoever. I felt my little guy flutter in my belly and I was healed. I realized in an instant that the movement I just felt was that of my son - the same son that was in there last week, last month, from the beginning. He was no different then he had been all along. The only difference was that I now knew a little something extra about him.
And so it began...a new journey for our family that would change each of us forever.
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