Rare Diagnosis

“IT’S A BOY!”

“It’s a boy!” the ultrasound technician exclaimed during our appointment. She then proceeded to quietly go through the routine exam of all the body parts. She kept looking at his head and taking lots of pictures, not speaking a word of what was going on. She left the room and returned with the doctor who took the reigns.

After what seemed like forever, they finally told us what they suspected.

There was a cyst on my baby’s brain.

There was something seriously wrong with my baby who just a few weeks ago I didn’t want, then suddenly decided I couldn’t live without. My heart sunk. I was in immediate tears. I could barely breathe. The doctor tried to provide comforting words to me that these types of cysts often go away. However, I knew at that moment something was really wrong. I already had mother’s intuition.

It felt like months before our appointment with our specialists, Dr. Courtney Stephenson and Dr. Thomas Stubbs. I remember my mom and my boyfriend at the time complaining about how loudly and often I was sighing. The emotions on my 17 year old heart were literally too much for me to bear.

Our appointment was the next week at CMC Main in the Women’s Institute. Anxiety ridden, I sit on the table and we begin the ultrasound. My sweet mom and my DAD came to the appointment. {Guys, I’ve never seen my dad take off work for really anything. This shows you how amazing my parents are – truly gifts from God}. The technician performs an ultrasound and then goes to get the doctor.  Now, Dr. Stubbs began to use the ultrasound machine but soon called in his newest doctor from NYC, Dr. Courtney Stephenson, who specializes in cysts. It wasn’t looking good. More ultrasounds. Why have 3 people had this wand up my lady parts?! It was hurting, uncomfortable and I was sick with anxiety.

Finally, we receive a diagnosis that it is indeed a cyst, and it won’t be going away. My sweet baby was diagnosed with schizencephaly. Schizen – what?! The doctors start saying things like “incompatible with life” “failure to thrive” and “2nd trimester termination”. My dad stands up and has me and my boyfriend leave the room. Here we are again, my parents are taking the weight as much as they can off my shoulders to put it on theirs. Several minutes pass while we awkwardly wait in the hallway, confused, anxious, sad, every emotion you can name I was experiencing.

God is testing my decision. My heart. I am basically told to not have this baby because he won’t have a decent quality of life.

Schizencephaly is an “extremely rare” brain condition as defined by the National Institute of Neurological Disorders and Stroke. How could this have happened to my baby? Is it because I didn’t want him? Because I didn’t take care of myself during the early stages of pregnancy? My doctors assured me there was nothing I could have done to have caused this as it happened very early on in pregnancy, before I would have ever known I was pregnant. Still, the guilt lay heavy on my heart.

The conversation of that day ended with me firmly stating we are having this baby, I have already chosen life once and I am not ever going back on that. We set up our next appointment for further tests.

Stress takes its toll

The next few weeks were a whirlwind. I had more ultrasounds, NSTs (non stress tests) twice weekly, and an amniocentesis performed to check for genetic abnormalities. After every test that was performed I had terrible anxiety waiting for the results. The stress my body was under finally took a toll on my baby and my amniotic fluid dropped. I was put on bed rest until the fluid levels increased or I had the baby.

This is when having a twin brother comes in handy {thanks, Mike!} – he brought me home all my homework and kept me up to date on my class work. 

Choose life

I see many people complain that Catholics are against abortion, but not for helping those who have babies. This could not have been further from the truth for me. My Catholic school and community was amazing and supportive of me – if there were judgmental people and looks, my parents, friends, and advocates at the school did a damn good job keeping them away from me. My teachers did all they could to keep me on schedule to graduate in all my honors and AP classes… I am forever grateful for their extra help and support. {Please, if you are reading this and scared of being pregnant, REACH OUT! I will help you. I will guide you to the right places for support. Choose life}

I had sweet family members, friends, and neighbors throw baby showers for me. The love and support being thrown my way was so incredible! My parents continued to show up and take me to every appointment. My dad had {and still has!} an incredibly demanding job that requires a ton of travel and time yet he made it to most of my appointments.

Inspiration

My amazing doctor, Dr. Courtney Stephenson, was such an inspiration and positive role model for me throughout my entire pregnancy. She was so encouraging and supportive, and seeing her as a working mom was very inspiring. After I had Jason, she strongly encouraged me to pursue a career in medicine. I shadowed her in her clinic for a few days, and she even had me shadow her during a c-section! During the c-section, I actually fainted and decided after that medicine just wasn’t going to be in the cards for me, ha! Truly, her support of me personally was so influential. I’ve recently had the opportunity to give back and help her, but I’ll share that another day 🙂

 God’s Miracle

The time was drawing near! Dr. Stephenson gave me a deadline on when she would deliver the baby if he did not come on his own. Fortunately for me, Jason decided to arrive early.  My mom, sister, brother (and his friend) along with my boyfriend at the time were all there at the hospital with me. I remember being in labor vomiting up pizza and my friends were calling because they wanted to come over… it’s so funny now to me!! My dad was in NYC to receive an award for a big promotion he received, but he hopped on a plane back to Charlotte to make it to the birth.

Dr. Stephenson gave instructions to her staff to page her when I went into labor. Although she was not on call the night I gave birth, she left her kids and came to the hospital to deliver Jason anyways. This woman works all.the.time. Yet she still came back to work when she didn’t have to. I’ll never forget how much better I felt and more at peace when she came in the room.

I was in the high risk room with a special isolette that Jason would be whisked away to right after he was born. The doctors still weren’t sure what was going to happen upon delivery – would he breathe on his own? Would he have seizures? There were so many unknowns. We had all the specialists from the NICU in the room to take care of him at a moment’s notice.

On January 21, 2005 at 10:43pm Jason Tyler was born into this world. By nothing short of a miracle from God, he came out breathing with APGAR scores of 9 at each check. To say everyone was stunned would be an understatement. He was still taken back for more testing (CT scan, EEG, EKG, etc) but nothing was unusual so he required NO extended hospitalization and we were able to go home with him after just a few days!

Just the beginning

This is just the beginning of our story. Life with a special needs kid is complicated, exhausting, and never-ending. I look back on pictures of sweet baby J and remember how innocent I was! I had no real idea of the struggles that were ahead… 

{Stay tuned for more posts}