As told by his mother Kalyn.
Just about a year ago I got the best news of my life: My husband and I were expecting our first baby. We couldn’t have been more excited and happy… and scared. A baby! I had always wanted to be a mother ever since I could remember, and boy was I ready. My husband, on the other hand, was nervous. He had never spent time around babies and had no idea what to expect.
We went to our first 13-week ultrasound together. I was beyond excited to get a glimpse at our baby! That excitement was short lived when the doctor came in to discuss our results: she stated that the baby had a little extra fluid around its neck (a measure of 3.2 to be exact). All the other measurements were perfect, but the neck fluid was a concern, so she strongly recommended we come back the next day to meet with the genetic counselor.
In that moment, my stomach was engulfed with that feeling one can only refer to as a “pit in my stomach.” My husband and I mindlessly walked out of the doctor’s office, our eyes fell to the floor. The next day we found ourselves in the doctor’s office again with a genetic counselor. She discussed our options. Words such as Trisomy 13, 18 & 21, amniocentesis & genetic testing were all thrown around in our meeting. In the end and after much thought, we decided to have a MaterniT21 blood test.
Less than 2 weeks later, we got a call from our genetic counselor with good news, while the results are only 98% accurate, all of our tests came back negative, and we were told we were going to have a baby boy. I was surprised. I honestly thought we were having a girl. When we first found out we were pregnant, I (embarrassingly) created a Pinterest page fully dedicated to a baby girl. My husband looked at me as we hung up the phone and said, “You are actually disappointed its a boy.”
And I quickly replied back “I just thought it would be a girl.”
It only took a few days before I became overwhelmed with excitement about the thought of a little boy running around. My husband is manly man. He played football through high school, and is a dedicated hunter and outdoorsmen. A baby boy would be perfect.
Once again, that excitement was taken away from us. A few weeks later we went in for our 20-week anatomy ultrasound. We walked into our MFM specialist’s office once again. I plopped on the table, excited to see our boy. The tech confirmed he was still a boy! The technician finished her work, but mentioned the baby wasn’t in the best position and that she had a hard time getting all the pictures she needed. She said that the doctor would be in shortly to see if she could get the shots. As the doctor did her work, I watched her face, and my heart sunk again. Once again, she had more bad news for us. She had seen something wrong with the baby’s heart; she quickly called the pediatric cardiology office and got us an appointment for the following day because she said this “simply could not wait.”
The following morning my husband and I got into our car and drove to yet another specialty appointment. We waited anxiously for the cardiologist to start the fetal echocardiogram. It took the first doctor about 45 minutes to see everything she needed to see. After she was finished we heard, once again, that the baby wasn’t in the best position and that she wanted to look over the pictures with her colleague and that he would probably want to look at the baby himself. We waited another hour for the doctors to come in. The second doctor did want to take a look for himself, and another 45 minutes later he was able to get the baby in a good position and was able to get good pictures. After everything was said and done, the doctors told us that the baby had a hole in his heart- the doctor called it ventricular septal defect (VSD), and a mild aortic stenosis. All treatable. All signs pointed to a pretty healthy outcome. We set up another follow-up appointment for 2 months.
The following two months flew by. I sure was loving my pregnancy. As my baby boy grew, his kicks got stronger, and I fell in love with his little tush that was sitting nicely tucked in my left side and his little feet that found their way into my right rib cage. I went for daily walks and took a “gentle sol” yoga class every Friday morning. We took a tour of the hospital we were going to deliver the baby at, and my family threw me an amazing baby shower. I loved being pregnant.
At our next pediatric cardiology appointment, the baby’s heart was bigger and the doctor got a better look at the problem. He told us that that VSD was so tight it was practically non-existent. With a better look, the doctor could see that the baby had a bicuspid aortic valve, and the aortic stenosis was much more severe than he originally thought. He told us that the baby could possibly need a catheterization procedure when he was born to open the stenosis; this would have to be done at a bigger hospital in the city.
It was six weeks before my due date, and we hectically made arrangements to meet with our new team in the city. We met with several pediatric cardiologists,the neonatologists, the MFM specialists and OBs… we met with everyone, and everyone was optimistic about our baby boy’s outcome. While his diagnosis was in the high moderate-low severe range, all our doctors were hopeful that he would only need to be hospitalized for a few weeks before we could bring him home. We scheduled an early induction for August 30, 2015 at 7pm; I would be 39w2d.
Needless to say, I did not make it to August 30th. On August 24th, I went to my weekly OB check up, and my blood pressure was high. The doctor sent me to the hospital for monitoring at which point after several more high blood pressure readings, the attending OB had said because I was considered full term, I should be induced. He contacted my team in the city, and they insisted we come down for monitoring. They, too, recommended we start induction. Baby boy was on his way! Our labor process took 3 days, and at 12:15pm on Wednesday, August 26th I was fully dialated and our little boy was on his way. We had to hurry. They transported us to an OR because we needed more room as our baby had a team of 15+ doctors waiting for him.
After 5 pushes in less than 20 minutes he was here. Ryan Matthew. I never fell in love so quickly before in my life. I was mesmerized and once again shocked. He looked just like his father. I thought for sure he would look like his momma.
They swept him away to the NICU and me off the recovery. At about 5:30pm that evening, the pediatric cardiologist came into my room and stated that the baby needed to be transfered to the children’s hospital to get the catheterization procedure done as soon as possible. My husband and I quickly went to the NICU so I could see our sweet baby before he went to a different hospital. I remember looking at him, and as I started talking, he turned his head and looked at me with the biggest blue eyes, and the rosiest red cheeks I had ever seen… My God, was he his fathers son, a spitting image to be exact. My time was too short with my baby, but they needed to get him to the children’s hospital. I kissed his sweet hand and turned to my husband and told him to make sure he talked to baby Ryan and to tell him all about our plans for him.
The procedure was a success; during the procedure the doctor was able to see just how broken his heart was, and he diagnosed Ryan with complete Shone’s Syndrome (Ryan had all 4 components that make up the condition).
Ryan was doing okay, so I was able to, with hesitation, drift off the sleep that night. I woke up to a nightmare. Ryan did not do so well over night. My husband later told me that all the heads and directors of departments worked on my son all night long. He said all the grey-haired doctors took over for the younger doctors. My heart sank some more. At 6:30am, my son was taken into his second surgery in 12 hours to have a pacemaker put in. By 8:30am, the pediatric cardiologist that was caring for our son called my cell phone and said she had to brace me for bad news. Ryan was not going to make it. Even after all their best efforts, his heart condition was significantly more critical than ever imagined. She quickly got me discharged, and I was transported to the children’s hospital to see my son.
The next few hours were a blur. I demanded to see the doctor. She had to now face me. Momma Bear! I don’t remember what she said. I heard bits and pieces. I heard “not a good quality of life, a very tough road ahead of him if he were to live, organs are shutting down, and several surgeries throughout his lifetime”… not what we wanted for our sweet boy.
My husband and I had no choice, our baby’s body had already started shutting down. We had him baptized, and I held my son tightly in my arms. Again, I heard nothing. All I could do was whisper into his ear how much I loved him…Mommy loves you. Mommy loves you so much. Mommy needs you. Please don’t leave mommy. Mommy loves you.
He passed away at 11:18am on August 27, 2015. Less than 24 hours after we said hello, we had to say goodbye.
Almost five months later… How am I expected to begin my new life when I had to leave my baby behind? Where is my baby? Why does my heart feel so empty? Who am I?
I barely recognize myself these days. I find joy in very little. I struggle with the cruel reality that after 9 long months of growing a beautiful person inside of me, I am now forced to live in this empty body; a body without it’s baby held tightly in it’s arms. A baby to take away the fact that this body hurts. Recovering from my delivery physically hurt sometimes. I suppose most mothers have their babies to distract them from the pain. I was forced to face the pain with no distractions- how cruel!
What should I do with myself today? I took a walk. A mindless walk. A walk I had imagined I would be taking with my baby. I cried. I cried because I took my walk alone.
Read more on Kalyn’s blog.