Five years ago I was in hell…parenting hell. You’re probably wondering how that’s possible but I can tell you with 100% certainty that the temper tantrum your child threw at the grocery store over the candy bar you told them they couldn’t have doesn’t even come close to what watching your child be rolled away on a gurney towards the OR feels like. Maybe at the grocery store you are embarrassed, angry and ready to lose you’re damn mind but it doesn’t compare to the downright devastating and scared feelings of scenario #2, although the ready to lose your damn mind might be a close similarity at times.
Five years ago scenario #2 happened. I watched my sweet 5 month old baby boy be rolled away towards the OR to fix the heart defect that we had found out about when I was 6 months pregnant. Constantly talking about the possibility of surgery and then actually scheduling the surgery doesn’t prepare you for the feelings actual surgery day brings. As a parent you want nothing more then to be able to protect your child, fix their problems and take away their pain and in the hours I sat in the waiting room, next to his bedside and fighting with the pain management team I felt completely helpless. That feeling of absolute helplessness is why I relate this to hell. There was nothing I could do but trust his team of doctors and make my voice heard when things didn’t seem right. I am happy to say hell lasted about two days, when he finally started to take a bottle again there was a light at the end of the long dark tunnel from a few days earlier.
Now I look back and I can still feel those feelings on days like today but now five years later there is so much more to my sons story. He has been through so much since his surgery with the additional specialists we had to add to his team and the two additional times he had to go back in the OR (non heart related). Through it all he has stayed strong and in turn he has given me more strength then I thought I could carry. He has taken a love for things like collecting Hot Wheels for Toys for Tots and in those proud moments I’m reminded that the parenting hell I was once in only lasts for a small time and is replaced by these amazing moments.
So as a mom who has lived through this form of hell I am here to tell you to hang on, speak up and pull strength from the amazing warrior in you’re life. At the end of the long dark tunnel there will be some form of peace and I hope it’s the kind that brings you tears of joy and a smile.
It’s February 1st which means the start of Heart Health Month! Yes I know Valentines is this month too and 6 years ago February to me just meant Valentines Day, chocolate and roses but now it means so much more.
July of 2011, it was hot, I was about 6 months pregnant with my first child, a son we named Brayden, I was sitting at baseball 4-6 nights a week and did I mention it was hot. Well also in July on a visit at my local Maternal Fetal Medicne they noticed extra fluid in Brayden’s brain and referred us to The Children’s Hospital of Philadelphia for a follow up. This in itself was a huge hit to the excitement of being pregnant. How could my baby need to be seen by a specialist before he was even born?
The Center for Fetal Diagnosis and Treatment at CHOP got us in quickly to be seen. Before we knew it we were making the hour drive (without traffic) to the city for an early morning appointment for a day filled of testing. The day started with a Fetal MRI. I was put in a tube with protective gear for the baby and the techs did their thing while my then fiancée took a nap in the corner (sorry Jay I had to). The humming of the machine is hard to forget. Afterwards we headed for a regular ultrasound where they checked every single thing on Brayden’s growing little body. We then moved on to a meeting with a genetic counselor. She asked every question under the sun about us and our families medical history. We got a brief break to go grab some lunch and no it wasn’t all that healthy it was McDonald’s but when your pregnant and hungry in a time crunch sometimes that’s the best you can do and well at the time it tasted good too.
Back upstairs in the center we went in for an echo with the Fetal heart program. This is something we were unaware would be happening before getting to the hospital but it, thankfully, was a requirement for all mothers coming into the center for fetal diagnosis. It was during this part of the day where things started not to feel right. It started out like a basic ultrasound, I had warm jelly smeared all over my stomach, we could see the pictures on the screen, and hear his heart beat but the more and more people coming in and out of the room was not normal. Different doctors and techs were taking turns coming in and in the pit of my stomach I knew something was wrong. They printed us some more pictures and we were sent into the waiting room.
And then suddenly the waiting was over. We were called to come back to a conference room where we were greeted with not one, not two, but three different teams of doctors. First up was neurology, they told us that the fluid in the back of his brain was indeed fluid and not a tumor – in my head I’m screaming “yes good news!” Second it was urology’s turn, Brayden had struggled with enlarged kidneys since almost the beginning but after the ultrasounds they determined it was within the normal range for boys and that his kidneys were fine – in my head I’m screaming “yes more good news but who are these other people!?” Then the last group of doctors introduced themselves, they were from cardiology. Immediately my head started spinning why is cardiology consulting us right now we didn’t come here for his heart? The first cardiologist started with something to the affect of “we found something wrong with your babies heart.” Umm, what, come again?! The next doctor pulled out a packet of papers she laid out on the table. They informed us that Brayden appeared to have a double aortic arch which is rare to find this early since their hearts are still so small. With the help of a heart model and the picture diagrams they explained that Brayden’s aorta had two branches instead of one. The second branch wrapped around his trachea and esophagus. They couldn’t tell how tightly it was wrapped so he had the chance of being born not being able to eat, breath or both. If he did have or develop symptoms he would need surgery to cut the extra branch to release its grasp on these two important structures. They ended their presentation of Brayden’s diagnosis by placing a box of tissues on the table and gracefully exiting.
How in a matter of minutes could my heart shatter into a million little pieces? How could suddenly a relatively easy pregnancy turn into a nightmare? How could I have prevented this? Did I do something wrong? What if this ends badly? How could this be happening to my baby? Is this really my life right now?
Jason and I sat in tears as all of the above questions swirled in my head. The only positivity from our devastating news was that it could be fixed whatever that really meant. We wiped our eyes and made our way to the desk to make my next appointment. The next step was telling our family what had just happened, but first we went to Chickie’s and Pete’s and sat in silence. After managing to get down whatever food my sad and shaking body would allow we started the trek home and the journey of breaking the news to our parents.