A Journey of Unconditional Love, CHD and HOPE

A Journey of Unconditional Love, CHD and HOPE

written by Kristi Unick, Keyan’s mother

Hypoplastic Left Heart Syndrome, Restricted Atrial Septum, Congenital Heart Defects.  Before early November 2009 I had never heard those words, nor did I know at that time being thrusted in to the Heart World would change and shape me as a person. On January 20th, 2010 I gave birth to our first son, Keyan Wayne Unick in Boston, MA at 1:45 am. During our entire journey the one word that held us together was HOPE and believing our story would unfold how it was meant to be. I sit here reflecting back on the impact my Heart Angel Keyan has had on us, our family and our friends. Seven (7) years has passed (although it feels like just yesterday) since our journey with Keyan and Congenital Heart Defects and not a day goes by that I haven’t thought of him. Keyan is at rest, but the ripple effect of grief still takes over and the unconditional love you have for your child never dies. There are some days I smile thinking of his short life and what he has taught me and sometimes I’m overcome by tears. I have grown and learned so much and met the most amazing people along the way, but I have also learned that there is no right way to grieve, the right way is your way. Our journey has strengthen my faith and I do believe in signs from above however, I must start you at the beginning.

Early November 2009 in Kearney, Nebraska, Scott and I had our first ultrasound. We were eager and excited to learn the sex but little did we know that would be the least of our worries. After a two (2) hour ultrasound we were taken to another room and sat down and our doctor utter the words “It appears your baby may have something wrong with his heart however the doctors in Omaha would be able to take a better look.” I was instantly a mess, tears coming down uncontrollably and I just remember looking at my husband Scott, he was staying strong for me, but he had this look on his face of just trying to process it all. Our doctor already had an appointment made for us in Omaha the very next day and she hands us papers and maps of UNMC and directed us where we need to go.

That day I start to grieve because I knew in my heart our son would never have a “normal” life. There was so many things that run through your head but I was baffled, at a loss for words, how can this be, I have never heard of Congenital Heart Defects (CHD)!

We had additional test done at UNMC, the doctor confirmed that our son did indeed have a major CHD, however he could not give us a diagnosis nor could he give us a prognosis. We had to wait two long weeks to get into a pediatric cardiologist in Lincoln. In that two weeks, I researched and researched what they told me appeared to be incorrect with my son. I found so many heart defects, but one that stuck out that I was certain he had was Hypoplastic Left Heart Syndrome. One of the more complex CHDs. I knew in my heart after all the research I did that if he were to survive it would be a miracle. If he didn’t I wanted to donate any of his viable organs, because I knew if he did survive we would more than likely be the one in need of an organ. Finally, we were at our appointment for the official diagnosis. Keyan in fact had Hypoplastic Left Heart Syndrome. We had 3 options at this point. Compassionate care after he was born and let him pass naturally. A medical abortion, but at this point I was already too far along to have it legally done in Nebraska, I would need to go to Kansas. The third was to go through the series of open heart surgeries. Our doctor was straight forward and let us know that this road would be terribly hard and she couldn’t promise a quality of life for him. We opted to give our son the best chance at life and move forward with the pregnancy.

We went to appointments after appointments and the week of Christmas, we learned Keyan condition in the womb was deteriorating because he also have a Restricted Atrial Septum. Once again we were faced with an extremely difficult decision to make. Omaha wasn’t equipped to handle a case of our complexity. By this point, I was my son’s greatest advocate and I had done my research and mentioned during my appointment when our doctor said there was not much more they could do for us at this point. I blurted out “can’t they balloon open the Atrial Septum?” My doctor looked at me and said “You would do that? If any place does it, it’s Boston. I can’t promise your insurance will cover it.” Our Pediatric Cardiologist connected with the doctors at Boston Children’s Hospital and Brigham Women’s Hospital and I would need to make the trip to Boston at 30 weeks for an in utero intervention called fetal atrial septoplasty.

On Saturday, January 16, 2010 my mother and I flew out of Omaha. Scott would arrive in Boston on Tuesday, January 19th, our surgery was scheduled for Wednesday. Are you wondering why my husband didn’t fly with me on Saturday? Well that is because the company he works for just opened a new warehouse that week and he was the operations manager. He had a ton of stress both in his personal and professional life but he managed all of it with grace.

My mom and I arrive in Boston and we get our luggage. Of course my bag was damaged in the flight and the wheel was missing, so I had to carry my heavy bag (I swear I packed my entire wardrobe). We arrive at the hotel, it was late so we got something to eat and went to bed. We spent the next day not doing much but getting ready for Monday, when I would meet with all the doctors and have some test done. That night I was in a ton of pain, my stomach was oddly hard and it even baffled my mother who has had 7 children (six of us were premature and I was born at 31 weeks. I did make note of this to my doctor early in pregnancy). Somehow I made it through the night. I had appointments early on Monday morning.

I check-in to Brigham Women’s Hospital and start the monitoring process and to get steroid shots for Keyan’s lungs. I was still in a lot of pain and I did tell my nurse but my mother and I determined with our expertise of medical knowledge (lol) that I pulled a muscle carrying my luggage and this was the reason I was in so much pain. Turns out after 8 hours of monitoring, ultrasounds, high blood pressure and me still being in a lot of pain my nurse said “You know before we let you go back to the hotel tonight let’s just check to make sure you are not dilated.” Umm why would I be? Was my thoughts, but to be safe they did check me. Well wouldn’t you know the reason I was in all this pain was because I was in LABOR and 5 centimeters dilated!! I can’t even begin to tell you every thought that ran across my mind, but the main two were can we still have the surgery knowing Keyan need this to save his life and my husband is half way across the country and I’m in labor! I prayed silently over and over “Dear God please keep this baby in until my husband could get here, please let us make it to surgery!” I called Scott and let me know what was going on, Nebraska of course was having a major winter storm with ice and Omaha is a three hour drive on a good day. He tried to get an earlier flight but he wouldn’t have made it to the airport in time and especially with the icy roads. We decided it would be best for him to just take his original flight at 5:00 am.

I was admitted in to the hospital, they gave me an epidural for my pain. It was what I need to finally relax my crazy and anger uterus and stall my labor. They couldn’t give me any drugs to stop labor because they thought my placenta was tearing away from the uterus also. Over the course of the night we had three scares of having an emergency C-section, literally to the point where everyone is in scrubs and they are wheeling me out of the room because Keyan’s heart rate dropped. I’m not going to lie, I did freak out a little and was in hyperventilating mode when the realization of our situation hit me. I had operated in robot mode for the past couple of months not letting the full truth sink in. I prayed and I hung on to hope, because in those moments that’s all you can do. The lord answered my prayers! We made it to morning and I was still pregnant. My new nurse came in and introduce herself at 6:00 am. Her name was HOPE! Wow, what a sign that no matter what happens we can cling to hope. Scott arrived at 10:00 am at the hospital and I have never been so happy to see my handsome husband in my life.

We had a day full of testing, echos, and meetings with doctors and heart diagrams on figuring out what we could do to save Keyan. Through it all Hope (our nurse) was right beside us all day. She even took on an additional shift to stay with us. I hadn’t dilated any more so they were getting ready to transfer me to another room for permanent bed rest, but as they were getting ready to transfer me to another floor my water broke, yep that is right, MY WATER BROKE! No turning back now.

Keyan was born Wednesday, January 20th, 2010 at 1:45 am (EST) weighing 3 pounds 3 ounces. He came out fighting, his stats were good (if they weren’t he would not go into surgery). They stabilized him within a matter of minutes and transported him to Children’s Hospital. My husband was able to walk with the doctors and Keyan into surgery while I had to stay back. Dr. Marshall performed a surgery on him that she hadn’t tried before and she went in through his umbilical cord to operate on his heart. Keyan proved to be too fragile and that quickly he went back to God’s arms. He lived for a little over two hours. Scott and I did not hold him before his surgery because we knew just how important is was for him to get to surgery. We just both thought we would see him after surgery and at that point we could touch him. I did get to hold him after he passed. He was so perfect and precious and so small. The medical team came over to us and said they knew we were considering at one time donating his organs. I was thinking how does a premature infant have viable organs? They asked me to consider donating his heart and lungs for research at Harvard Medical School. Dr. Marshall also wanted us to know although Keyan didn’t survive she felt with this procedure she had tried it would be successful with saving babies in the future and it has! To me CHD research has been vitally important since I heard those words from my doctor “It appears your baby may have something wrong with his heart”, because I know the research is the only thing that is going to continue saving our heart babies lives.

This was a true journey of Unconditional Love, CHD, and Hope and it still is.

I never knew you could love a person so unconditionally until I became pregnant with this very special and precious child. I continue to advocate for the Congenital Heart Defect World because if I can just help one person it makes everything all worth it. Keyan’s little life has provided HOPE to others and that in itself has made our journey worth every heartache, knowing that we just maybe have helped another family in a very similar heartbreaking situation.

Scott and I have went on to have two healthy children. Our daughter that just turned six years old (yes I had two babies in one year, but that is another story) named Paxson Grace. Our son is two years old and named Kayne Scott. He is named after Keyan and only after we named him did I find out the meaning of Kayne and it means TRIBUTE. If that isn’t a sign from above I don’t know what is. Oh and as for our nurse Hope, Scott and I created a friendship of a lifetime with her and her family and we have visited each other many times in the past seven years.

Posted in: Advocacy, Awareness, CHD, Education, Heart Angel, Heart Hero of the Month, Heart Heroes

Leave a Comment (0) ↓