“I never got to see if her eyes were as blue as her sisters.”

Guest Blogger: Ana

First birthdays. The one thing parents look forward to, yet deny that their child is actually growing up. It means they are no longer a toddler. The balloons, birthday cakes, presents, family, and friends. What parent wouldn’t be excited for their child’s first birthday?

My name is Ana. I am 26, and a stay at home mom, while also going back to school. A wife and mother to two beautiful girls, three if you count the dog. Yes, you read that right, two girls. Carsyn lives here on Earth, Kennedy in heaven. My goal has been to share Kennedy’s story to as many people as I can, and to try and share my raw emotions through this extremely painful journey, to simply raise awareness. As Kennedy’s first birthday grows nearer, our family prepares for these celebrations much differently. Here is my story.

In August of 2014, my husband and I bought our very first home. A home to raise our family and give our German Shepherd and 8-month old daughter, at the time, some space; a place to call our own. Shortly after closing and moving in, I became pregnant with Kennedy. A big surprise to us, but nothing short of happiness. As the months grew on, 20 weeks came around quick! In December, we went to the doctor to see our newest addition for the first time and to find out if we were having a baby boy or baby girl. We would be celebrating Carsyn’s birthday that week, so we thought it would be fun to find out the gender while celebrating a first birthday. During our ultrasound, our doctor had found a defect in the heart, but what she thought was a little hole in the heart, or a septal defect. From there, we were referred to a specialist who would take a closer look. It was hard hearing there was anything wrong in general. A little bitty baby shouldn’t be “defected”. They haven’t done anything wrong in this world to deserve to be anything but perfect. We had to wait an entire month before we got to meet with our specialist, due to my husband’s grandmother’s passing and the holidays.

January 2015 we finally met with our specialist who had another ultrasound done, mainly to look at her heart. I remember so vividly that moment she sat in front of us, Josh Groban’s You Raise Me Up was playing out of the speakers in the room, and told us that our baby had a very severe heart defect called Hypoplastic Left Heart Syndrome (HLHS). As our world stood still, emotionless, cold, and lonely, she continued to explain that Hypoplastic Left Heart is a severe underdevelopment of the left heart, requiring a series of surgical interventions crucial for survival. Never in my life had I ever expected I would be in this position. I was healthy! I’ve always been healthy! I lost my mom at 18 years old unexpectedly. I never thought that could happen to me and it did. Being told that I could possibly lose my baby, it CAN’T happen to me…. it did, and it can.

We knew we had a tough battle ahead of us, as our doctor appointments became more regular, almost on the weekly between 2-3 different offices and hospitals, we received bad news, after bad news each time. We then found out during a fetal echocardiogram that Kennedy had another set of defects: double outlet right ventricle, and an intact atrial septum. The intact atrial septum would cause her lungs to become weak, sick, and stiff. At 30 weeks, on February 24, 2015, our family walked into Mott Children’s Hospital in Ann Arbor to have a rare in-utero surgery done called fetal intervention. In this surgical procedure, it is similar to an amniocentesis, except the doctors would have placed a needle with a balloon through my belly, directly through her chest and into her heart. They would open up the balloon to open up her septum and place a stent in it to keep that septum open like it is supposed to be in the womb. I’ve never been more scared in my life. I’ve always heard about these types of procedures, mostly on TV, but never imagined I could be the one having it done. Unfortunately, we were not able to have the procedure. The doctors did not feel comfortable continuing due to the newest pictures that showed Kennedy’s underdeveloped left heart was smaller than they had expected it to be.

Fast forward, or should I say slow forward, a couple weeks to March. My husband is a track and field coach for Michigan State University. His season was getting busy on the regular with indoor season wrapping up and outdoor season about to start. He had just left for Arkansas for indoor NCAA national championships on a Wednesday and I had a doctor’s appointment on Friday. This was the first appointment I had been to alone, so I was already pretty nervous. It was just a simple growth check to be sure she was still growing inside my belly with everything that was going on with her. Once again, our doctor came in, sat in front of me and told me she sees fluid in Kennedy’s abdomen and a little swelling on her scalp. This fluid in the abdomen is called hydrops, and it is the first sign of heart failure. She directed me to go directly to Ann Arbor and to meet my doctors there and let them monitor me more closely. Blaine was hundreds of miles away, at the second biggest meet of the year, and I was alone trying to compose myself enough to drive 60 miles to the hospital with unknown expectations for our child’s future. He hopped on a plane last minute, and came to be with us for the rest of the weekend, while his athletes were competing at nationals.

We had scheduled Kennedy’s delivery, via c-section, for April 20, 2015. I had Carsyn natural, and very quick, so a c-section was new to me. I was scared, not to undergo the surgery, but because of the scenario. I was delivering in an actual operating room on the general surgical floor, beside Kennedy’s heart surgeon’s OR. Her birthday came slowly, and with growing anxiousness. We were there early, and almost feeling like celebrities, everyone was prepared and awaiting our arrival. As I was getting my spinal tap, my hands and feet were shaking uncontrollably. My heart was racing out of my chest, and I, really, was absolutely terrified. The amount of nurses, doctors, surgeons, anesthesiologists, people in general in the operating room was almost unbearable. They were all there for me, for Kennedy. The maternal-fetal medicine doctor had already started cutting into me when they brought Blaine in. I thought I was going to vomit all over the place, so I lay there with a kidney dish being held up to my face as I closed my eyes and felt my hands shake uncontrollably. At 8:36 am Kennedy was born. She cried. I didn’t expect her to be able to let out a big cry, but she did. Blaine kept repeating how beautiful she was with her dark hair, and looking exactly like her big sister. As I was stuck on the operating table, Blaine was able to see her and touch her. She was baptized and prepped for surgery immediately. Within 12 minutes of being born, she was on bypass and had her first surgery to open up the atrial septum.

I was eager to get up to the ICU to see her. The doctors called her a rockstar through the surgery and were very happy with how strong she was. They got me moved into a private room on the women’s floor and I went up to see her as soon as I could, about 3 hours after surgery. I was pretty out of it, and extremely exhausted going to see her. I was scared to touch her, even scared to look at her, almost trying to guard my own heart. I only spent about 10 minutes with her before I felt I needed to go lie down again. Blaine spent every moment he could with her, and still it wasn’t enough. Kennedy passed away that evening at 8:43 pm. She lived 12 hours and 7 minutes…

I never got to hold her; to kiss her while she was alive. I never got to see if her eyes were as blue as her sisters. I barely had the chance to tell her how much I loved her and how she has changed my life. Almost everyone thinks it can’t happen to them, but it can. We are 1 in 110 of this happening sporadically. I didn’t do anything for this to happen, even though I do feel it was my fault in some way. I have so many friends who are having babies, or had babies around when Kennedy was born. I’m still bitter for not having the chance to get to care for her, or to watch her grow. The best I can do as a mother is being her voice. Her advocate. An advocate for all the other babies who have been lost, and those who are still fighting.

Congenital heart defects are the most common birth defect. Twice as many children die from CHDs each year compared to all childhood cancers combined; and funding for pediatric cancer is 5x higher than that for CHDs. Heart research has come such a long way in the last decade, as early awareness and medical interventions are becoming more successful. There are still so many babies sent home with undetected heart problems. If you are having a baby or know someone who is, please have or ask them to have a pulse oximeter test done. It is not invasive, and it only takes a minute! A minute to save your child’s life!

You can read more about our story HERE