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Harper Genevieve Colchin: Sweet Little Punkin

I found out I was pregnant on November 23, 2019. Being a mother was the only thing in life that I have ever felt passionate about and it was finally becoming a reality. We shared the news with our families on my husband, Michael’s 29th birthday in December and announced to the world that we were expecting on my 26th birthday in January. We were just so excited that 2020 would be the best year in existence! Little did I know that this would be the year where everything that could go wrong, would go wrong.

On March 9th, 2020 we went in for the 20 week anatomy scan. With this being my first, I didn’t totally know what to expect. I noticed that the sonographer kept going back to the heart. I was anxious, but I thought… the heart is a complex organ, she is just making sure she is getting all the images she needs. Then she called another sonographer in and explained that she just wanted another person to try and maybe they would be able to see better. This didn’t feel right, but this was new to me, so how would I know? When the doctor came in, the first thing she said was “your baby looks okay, but we do have some concerns about the heart.”

My face felt instantly hot and I remember Michael and I looking at each other in disbelief. I was confused and in shock, trying to listen to the doctor…and then the tears came. I will never forget that moment. Something was wrong with my baby’s beating heart. This could not be real. A nurse walked me out a side door, so that I would not have to go through the waiting room crying. I remember thinking “I’m that person. I’m the mom that got the bad news and has to be walked out a side door.”

It would not be until the following week that we would have the fetal echo and diagnosis. Our daughter had Tricuspid Atresia, which is a single ventricle heart defect and one of the most complex heart defects to exist. This type of defect would require multiple open heart surgeries, including one in her first few days of life. Even though our cardiologist explained that this defect is not usually of genetic origin, we had already had an amniocentesis and would soon find out that in our daughter’s case, it was. She had a microdeletion called 8p23.1 deletion, which is so rare that it is only known by this technical name. This meant that there was a small section on one of her chromosomes that was missing. There is a specific gene this section, called the GATA4 gene, that is known to be an important for heart development.

At first, it almost felt like a relief to be told ‘this is what caused your baby’s heart condition.’ The alternative, ‘we don’t always know what causes CHDs’ is hard to accept. It felt like I was getting answers, but then suddenly I had hundreds of more questions that I simply would not get the answers to because the genetic condition is so rare that hardly any research has been done on it.

Once you get a diagnosis like that, the pregnancy is no longer normal. The doctors appointments were starting to get overwhelming, and I had to do them all alone because of the pandemic restrictions. I would get so sad and jealous every time I saw a pregnant woman at the doctor’s office, but the truth is, no one ever really knows if the pregnant woman they see is having a healthy pregnancy, and this has put that into perspective for me. As we got closer to her due date, we had to move 3 hours away from home to Cincinnati. Cincinnati Children’s Hospital is one of the leading pediatric heart hospitals in the country and this is where our daughter would be having her surgeries.

My baby girl, Harper Genevieve Colchin, was born Friday, July 10, 2020. I was induced at exactly 37 weeks because of my gestational hypertension. I thought she would be quickly taken away from me, but instead the NICU team assessed her in the delivery room and gave her back to me for some skin to skin. I felt so grateful because I had prepared myself to not get that experience.

Seeing my baby felt like what I imagine any new mom feels. I was overcome with love for her. I also felt a lot of feelings most new moms probably don’t feel... guilt, sadness, fear, and apprehension. Guilt for not having the hope that she deserved, as though I had given up on her before she arrived. Sadness for knowing that she was a sick baby, as I’ve known all along. And apprehension, as though I should wait to feel happy about her being here because soon things would go bad.

I was happy and strangely confused to see she was alive, honestly. Breathing room air, looking like a normal baby, just hooked up to some wires and IV lines. Throughout my pregnancy, especially towards the end, I had lost hope. I was sure my baby had no chance, or that when she was born, she would be in immediate danger. The last fetal echo 2 weeks before she was born showed that her heart looked worse than they originally thought, and Doctors told us to “plan for the worst but hope for the best.” I planned for the worst. Even though I had anxiety those first few days before she joined the zipper club, I was quite caught up in just loving my new baby. She seemed absolutely perfect, how could anything have been wrong with her? Everything in my mind shifted. I no longer had plans for the worst, but the exact opposite.

In my mind, it was like she was completely okay, and it was quite annoying that they had to do all these things to her. Of course, I knew that she was not healthy, I had known that for 17 weeks and already accepted that fact, but there was a new part of my mind that was completely in denial. We weren’t supposed to be here. Seeing her have a few supraventricular tachycardic episodes and being told her first surgery was in just a couple days was almost like getting the news about her sick heart all over again.

Harper had her first open heart surgery at 4 days old. Her surgery was successful, but she had a difficult time in recovery for a few days with mainly pressure and rhythm issues. The week that followed was looking hopeful, but on July 23rd Harper’s heart went into an extreme arrythmia episode that was causing significant stress to her body. She had to be shocked to get her rhythm back to normal. This was the start of what I would call Harper’s pattern. She would overcome one thing and gradually be doing better and better and then every 7-10 days she would hit another major hurdle. It was like walking on eggshells and waiting for the trapdoor to open at any given moment.

At 3 weeks old, Harper had to go back to the OR to have a stent placed in her heart, and the pattern continued on…she started doing better, even getting transferred to the step down unit at exactly one month old, and then she started doing bad again, developing NEC and being sent back to the CICU. It was absolute torture for her and us. There were so many times I felt like giving up, and then hating myself and feeling like a terrible mother for it. When we got transferred back to the CICU, I felt in my heart those feelings I had during pregnancy, that my baby girl was probably not going to make it. I was planning for the worst again.

On August 24th, Harper had to be rushed off for an emergency open heart surgery to have a BT shunt placed because her PA band from the first surgery was just not working for her anatomy anymore. Recovery after this surgery was exceedingly difficult as well. Her lungs were so sick from all the excess fluid they were holding on to, she was not progressing with her ventilator, her IV lines kept having issues and she was being poked more than I could take, she was having skin reactions from adhesives all over her body, we went days without being able to hold her, she was withdrawing from her pain medications. We were in such a dark place. Then she started progressing and it was a great feeling but knowing her pattern…we felt like we were just waiting for the next bad thing.

She was still having bumps along the way, but they were more manageable, so we allowed ourselves to feel hopeful again. She was able to begin learning to eat again, started gaining weight, was loving Facetiming and playing, and was developing such an amazing personality. We were transferred back to the step down unit and could not believe it when doctors told us that they planned on discharging her soon if all went smoothly. After 80 days in the hospital, 2 open heart surgeries, 2 Cath procedures, 3 separate times being intubated for a total of 18 days breathing on a vent, multiple arrhythmia episodes and a cardioversion shock, several days of battling infections, a billion pokes, x rays, and labs… Harper was finally discharged on September 28th.

We had to still stay in Cincinnati for a couple weeks because with Harper’s pattern, doctors felt it would be safest to be nearby. So, we were living in a hotel trying to figure out our new normal. It was so great to finally be able to hold her, lay down with her, and just love her and take care of her. It was also extremely scary. I was an absolute bundle of anxiety without the safety net of her monitors and doctors nearby.

In the days out of the hospital and in the hotel, Harper was having some issues with keeping her feeds down. This was a new issue for her, so it worried me. I talked to her doctors and expressed my concerns, but since she was doing so great with everything else and her color was looking great, we chalked it up to some reflux with the newfound mobility out of the hospital. Three days in, it just seemed to be so miserable for her, to the point where I felt uncomfortable pumping another feed into her, even though the doctors said to just pump it at a slower rate. I was getting more and more anxious that day, so we decided to take her to the ER just to make sure everything was okay and her feeding tube was not misplaced or something. I never would have expected what came next.

On the short drive to the hospital, Harper started breathing slower and just as we were pulling up to the hospital, she started becoming unresponsive and her eyes started rolling back. We sprinted into the trauma room, the team swarmed her, she arrested, and they started CPR. After almost 40 minutes, the doctors brought her back, but she was in such a critical state and she was hooked up to the ECMO machine. This night will forever be the most traumatizing memory for me.

The three days that Harper was on ECMO was literal torture. I could not think of anything worse for a family to have to go through. We had to wait for answers as to whether she had suffered significant oxygen deprivation, but deep down we knew the truth. Her body was deteriorating, and we had no idea how much pain she was in or if she was able to feel any at all. I wanted to stop the process right away because I could not take seeing what her body was being put through. But I also knew that I had to give my baby any possible chance she had. I still feel the guilt of putting her through those days.

On October 4th, we said goodbye to our beautiful first child. We made handprint molds, we washed her hair, and we held and kissed her. She passed away in our arms and we knew she was finally at peace.

Harper’s life was short, but it was meaningful. She was more than just a sick baby. She touched so many people’s souls. Despite what Harper’s heart took from her, I would not change anything about her. She would not have been her without her heart. This was Harper’s pattern, she did well and then she didn’t... and in many ways her death was another part of her just being her. That probably doesn’t make sense to those who have not been in our shoes, but it gives me a strange sense of peace.

We think about our angel constantly, and we know she is with us everywhere we are, but the pain can be debilitating. We will always grieve for our Harper and miss her more than anything, but she impacted our lives so much and gives us motivation to live purposeful life. I am so grateful to have known her and I am proud to be her mom.

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