Half the Heart, Twice the Fight: The Beginning of Our Journey with HLHS

December 8 -- 19 Weeks

Blaine and I were so excited to finally have our first ultrasound and see if we were having a little boy or another little girl. We had the gender placed into an envelope, as we would reveal the gender at the end of the week on Carsyn's birthday in her birthday cake. After our ultrasound, our OB came in and gave us heart wrenching news, our baby had a heart defect. We weren't sure what it was specifically and would have to meet with a neonatal-perinatal specialist in a couple weeks. I had to get tests done to check for other types of genetic/chromosomal disorders, all of which came back low risk. We ended up having to cancel our appointment with the specialist due to Blaine's grandmother passing away, and rescheduled it for the New Year when we would be returning to Michigan from Ohio. Those 4 weeks were the longest 4 weeks of my life. I knew my baby had something wrong, I just didn't have any answers.

Kennedy 19 Weeks Gestation

January 7 -- 23 Weeks

Blaine's brother, Blake, came to watch Carsyn for the afternoon while Blaine and I met with the neo-peri specialist. We arrived to the doctor's office and proceeded back to the ultrasound room with much anticipation. Little did we know, our expectations for the best would be completely flipped and changed to the worst. The tech went through a full body ultrasound, complete with bone and brain measurements. We didn't hear much about the heart, so I assumed it really couldn't be too bad. No news is good news, right? The doctor then came in to do her own scans and see Kennedy for herself. She told us she did see a heart defect, then left the room for a few short moments to gather her notes. Upon returning, she gave us the news no parent wants to hear, "Your baby has a rare heart defect called Hypoplastic Left Heart. There isn't any known cause for this, it just has a 0.2% chance of happening." She explained to us the general ideas of the underdeveloped left heart and explained the treatments for it, all that are not easy to swallow. We had 4 options: abort the pregnancy (which I said was not an option), leave it untreated after birth (which she would not thrive or survive), go through a series of 3 staged surgeries (all of which are very serious), or a heart transplant. Speak of total shock. I had no emotions, no tears, no thoughts, nothing. Blank. I didn't know what to think. Blaine had to return to work, and I back home to Carsyn. We walked to our cars and it finally settled in. Our baby has a chance of not making it.

That night was one of the hardest times I've ever gone through, which I never thought I could endure anything worse than losing my mother unexpectedly in September 2008, when I was just 18 years old. How could this happen to me? What have I done so wrong in my life for God to try and take one more from me too soon. It's not fair. And I have learned life isn't fair, but how could this happen again. Trying to research and read blogs of others and cope with still the unknown of what this thing called HLHS exactly is, and to have to live with it all at once was overwhelming. I cried, and cried, and cried. It was almost like my tears would finally dry and I would start crying again. I would look at Blaine to see the tears in his eyes and it would break my heart again. How could this innocent baby have something so wrong? Why can't I take it from her? Sleep that night was hard. We both woke up with swollen eyes, but so happy to see Carsyn smiling and laughing and healthy, so thankful. Times were tough, I had some very low moments of the day while Blaine was gone at work. Since I've known Blaine, it's always been hard when he's been away, wether it be at work or across the United States at a track meet; for a few short hours of the day or entire weeks out of the year, I've always needed him. It hasn't been easy being home by myself, especially in these times, trying to comprehend everything. I waited by the phone to hear for an appointment to meet with our pediatric cardiologist for a day or two. Once that call came, I still had to wait for 2 weeks to finally get a confirmed diagnosis. We still have one week until then, and I'm not sure I will make it. I have become swamped with doctor appointments between three different doctors so quickly, all of which will become routine over the next few months.

Some questions I know people will be asking, I will answer below.

I am due May 2, but am hoping to make it at least to April 25 (39 Weeks). They will probably be inducing as Blaine's schedule has him traveling anywhere between Ohio to California in the surrounding weeks and I will have to be in Ann Arbor to deliver.
They encourage a natural birth, which is what we will plan on doing, unless they have to do a cesarean for other reasons.
We will be delivering at C. S. Mott Children's Hospital in Ann Arbor (University of Michigan Health Systems), where Kennedy will stay and be under some of the best HLHS doctors and surgeons in the world.
The first staged surgery called the Norwood Procedure will happen within the first week after birth, if she is big enough. The second surgery called the Glenn around 6 months, and the final one around 3 years called the Fontan.

As I am so heartbroken for my daughter, I have found a strength within myself and my family that we will fight. We have so much faith and confidence in God and the medicine Kennedy will be receiving from our amazing doctors and surgeons, and know she will be a little fighter and overcome these hard times we will endure.