February is Heart Month
I was so much more nauseous this time around. I’ve heard that a second pregnancy can be worse symptom wise, and that was definitely the case for me. I endured the morning (more like all day) sickness, and then, light at the end of the tunnel. I was feeling much better and full speed ahead. Baby furniture shopping. Picking a name and nursery colors. All the wonderful things that come with the arrival of a little one.
Since we had already found out that we were having another girl (we had genetic testing done via blood test at 12 weeks), we didn’t expect much excitement at the 20 week scan. We really just expected them to confirm that she was a girl, and things went as expected at first. Everything seemed fine. But the tech kept going back to her heart. And then she said that she couldn’t get the 4-chamber view of the heart. And we really had no idea what that even meant. She led us back to the waiting room, to wait for my OB appointment. Unsuspectingly we waited. Not realizing how much our lives were about to change.
Angels come down from the heavens
Just to help us on our way
Come to teach us, then they leave us
And they find some other soul to save
“Broken Halos” by Chris Stapleton
Medically speaking, Springfield is a small town. The kind of small town where there is one perinatologist office in my insurance network. So getting an appointment on the rush really wasn’t in the cards. Our anatomy scan was on January 10, and we would have to wait until February 6th for our appointment. But I just couldn’t wait. I called my OB’s office and asked for another ultrasound. Maybe the baby had changed position, and they could see everything they needed to see then? They got me in that Friday. We asked the tech what she thought was wrong, and she said HLHS. And I knew what that was. Because of course I’d went home and googled heart defects after that anatomy scan (against my doctor’s wishes I should add). Hypoplastic Left Heart Syndrome. A rare and serious congenital heart defect.
We were referred to Children’s Mercy in Kansas City to see more specialists. There are good and bad things about a small town. This situation being one of the bad things – no specialists in Springfield to help us. But Children’s Mercy Hospital called the next day, and within a week, we were headed to KC.
Our appointment was on Tuesday, January 30. We made the three hour drive that Monday evening after work. We stayed at the Ronald McDonald House that night. Lying awake that night, I prayed for a miracle. And I prayed that God would lead us through this.
Our appointments started at 8:00 the next morning. Genetics, level two ultrasound, fetal echo. And at the end of the day, a consult with coordinators and a pediatric cardiologist. That’s when everything changed. That’s when we learned that Kaylyn’s situation was different. It was worse than just HLHS.
Her prognosis wasn’t good. Not even as good as “we can do the three stage surgeries” good. Pretty much the worst prognosis. Not only did she have HLHS, she also had an intact atrial septum, which is a particularly lethal combination. I vividly remember the pediatric cardiologist saying “She will be a very sick little girl.” To this day, I truly feel that this was her way of telling us that we would lose her, no matter what we did. And if we didn’t lose her, she would have very little quality of life.
When I decided to share our story, I told myself that I would not hide anything, that I would tell the whole truth. And that whole truth is that at that point, we asked about all of our options, which included terminating the pregnancy, comfort care after she was born, and surgery. Because her prognosis was so grim, we chose comfort care. We choose to spend what little time she was meant to have here on earth with her in our arms.
OAW came into our lives thru our connection with a local photographer, Michelle Renfro. She started taking our family pictures when Harper, our oldest, was six months old. I contacted her after Kaylyn’s diagnosis, and as an On Angels’ Wings volunteer, she partnered with us and OAW for pictures. We scheduled a date, and then she came to our house to take maternity pictures. She also insisted on traveling to Kansas City to capture Kaylyn’s birth, and we wouldn’t have had it any other way.
I also have always said that our situation was the best case scenario within a worse case situation. We knew ahead of time, so we had time to prepare and grieve. We were able to schedule her birth, so that our immediate family was able to be there when she was born. Kaylyn was literally surrounded with love during her short time with us, and for that we are forever thankful.
Since our maternity and birth pictures of Kaylyn, OAW has also provided us with newborn pictures of our rainbow baby Hayden, as well as pictures with Santa for both of our girls. They also grant an opportunity for us to regularly celebrate Kaylyn at the annual carnival. It is something that we look forward to every year. OAW has also sent us numerous keepsakes that we cherish along with all of the pictures.
As I write this, our rainbow baby Hayden is snuggled up next to me, and I know that we are truly blessed to have our very own angel watching over us.
Nichole Hyde
Mommy to Kaylyn
Congenital Heart Defect
