Hello- My name is Kalyn and for some crazy reason I decided to start a blog to tell my story. Two weeks ago, my baby boy passed away- he had a congenital heart condition referred to as Shone’s Syndrome. Most people have never heard of this because it is a rare condition that occurs in less than 1% of all congenital heart anomalies (childrensheartclinic.org). LESS THAN 1%!! Here is my story:
Nine months ago I got the best news of my life: My husband and I were expected 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 measure were perfect, but the neck fluid was a concern. The doctor told us that her cut off is 2.5, and she strongly recommended we come back the next day to meet with the genetic counselor. And in that moment, my stomach was engulfed with that feel 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 genetics 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. I have to tell everyone, my husband is manly man. He played football through high school, and is a dedicated hunter & 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. While we knew we were having a boy, we wanted to make sure he was growing healthy. We walked into our MFM specialists 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 and said that the doctor will 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 kept us in her office until we had an appointment the next day to see the cardiologist.
The following morning my husband and I got into our car and drove to yet another specialty appointment. We waiting 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 doctor’s 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 follow 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 my 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 a little more severe than originally thought. He consulted with 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. 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 (which is a story for another day… I promise you will love it and laugh). 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 (the baby had a team of 15+ doctors waiting for him)…
After 5 pushes, less than 20 minutes he was here! Ryan Matthew! I never fell in love so quickly before in my life. I was memorized… and once again SHOCKED! He looked JUST LIKE my husband! I thought for sure he would look like his mamma. 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 procedure done asap. My husband and I quickly got 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 in the the Children’s Hospital, I kissed his sweet hand and turned to my husband and told him to make sure he talks to baby Ryan and tell him all about our plans for him.
The procedure was a success, and 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 tells me that all the heads and directors of departments worked on my son all night long; he said there was a lot of grey-haired doctor’s 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” and “several surgeries throughout his lifetime”… not what we wanted for our baby boy. My husband and I had no choice, our baby’s body had already started shutting down. We got 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.
I wanted to create this blog because I need an outlet. I need to tell people my story. I need a place to work out my feelings. I feel empty today. I cried three separate times. I want to share my story. Please be patient with me. My first child, my only son was taken from me…
*disclaimer: I am by no means a medical expert. Everything written on my blog comes from my personal experience, and research that I independently did on my own*
Tags : Congenital Heart Conditions | Grieving | Infant Loss | Shone's Syndrome