Micah Pt. 1

I’m Kelly, I am 27 years old. My husband Daniel is my best friend. We have been together 8 years but married for 2. We both grew up in New Market and decided to buy a home here back in 2019. I work for my family’s electrical contracting company, based out of Frederick and my Husband works for a construction company out of Mount Airy.

Our free time consists of basically hanging out with our families. But I would say we are home bodies, we look forward to sitting on the couch watching The Soprano’s with our pup, Frank!

What grief story are you going to be sharing with us today?

I want to share our story of our angel baby, Micah. We had tried to conceive naturally for about 14 months before we qualified for fertility treatments, because I have unexplained infertility. We were lucky enough to conceive our sweet girl after one round of Clomid with an IUI procedure (intrauterine insemination), the procedure was done the day after my beautiful Niece Veronica was born! We were thrilled to find out that the procedure worked and even more thrilled when we found out that we had a baby girl on the way. We had several appointments that went well, nothing out of the ordinary including our 20-week anatomy scan which was signed off as normal. This put me at ease because at 21 weeks I had a fetal echocardiogram scheduled as a precautionary measure because my husband has a left sided congenital heart defect, and it was recommended by his cardiologist. Although we knew that there was a chance of having children with a CHD (Congenital Heart Defect) I was completely blindsided by her diagnosis, especially because Daniel’s doctors never really made a big deal out of anything other than suggesting a fetal echo. We never imagined it could be worse than what my husband has and just one week before I was told I had a healthy baby. Micah was diagnosed with Hypoplastic Left Heart Syndrome also known as half a heart syndrome. HLHS occurs in about 1 in 4,300 of live births, and it’s when the left sided structures of the heart are severely underdeveloped, which is why HLHS is one of the most in-utero diagnosed CHD’s because it’s so visually apparent. The left side of the heart is responsible for circulating oxygenated blood to the body, so for someone with HLHS the right side of the heart ends up doing all the work. There is no cure, only 3-stage open heart palliative surgeries that are done over a three-year period to re-route how the heart would pump blood using the right side of the heart but eventually Micah would have probably needed a heart transplant. The 3-stage palliative surgeries have only been around for about 30 years, so before that existed these babies would die within a few days. Now, there are people in their later 30s that are still living with the palliative surgeries. Since those with HLHS are only now living as of 30 years ago, there is minimal available research on the care for HLHS and what the long-term outcomes are and as of now only 50% of babies born with HLHS make it to their 5th birthday.

Micah’s case was very severe, past the point of being able to do an in-utero repair- if caught earlier they could have tried a procedure where they open up the aortic valve basically with a balloon to help the blood continue to flow and hope it slows down the deterioration of the left ventricle – this would have been done by a long needle going through my stomach and into Micah’s heart while she was still in the womb. The first option given to us was to terminate the pregnancy, which was not the right option for us. At that point we had a lot of hope that maybe something would change, or we could just get her through these surgeries. We now had to go to Children’s in DC every few weeks to monitor Micah’s condition and as the weeks went by things got worse. She was originally diagnosed on October 27th, 2021, then a few days before Thanksgiving it was discovered that she had a Restricted Atrial Septum (An opening that allows oxygenated blood to flow from the left upper chamber of the heart into the right upper chamber of the heart) in addition to the HLHS which complicated things even more for her chances of survival. The Atrial Septum opening is necessary in every baby, and the defects can be that they are either too big or too small/closed. The RAS caused a rare complication called Pulmonary Lymphangiectasia which is nutmeg pattern scaring of the lungs. This condition was confirmed January 12th, 2022. This combination was 100% fatal. My maternal fetal medicine doctor, and OB didn’t seem familiar with the diagnosis. There was a doctor at Children’s who had only seen this combination 1-2 other times in his 10 years at the Children’s CICU. We knew when I was 32 weeks that we would not be bringing our baby home with us, so we opted for comfort care for Micah. This was the hardest decision Daniel and I had ever had to make. Even though I knew they didn’t think this - I was scared that our families would think we were just giving up, but we had been told that it was very likely that she would not live past her first breath and the only other option was to try to a C-section and see if they could do anything for her. This would mean that if she did live even for a couple of minutes, she would have not spent it with me or her dad. She would most likely die with a stranger, and I would never have the chance to see her alive. It felt like we were being kicked when we were already down. We worked with the palliative care team at Children’s and at Fredrick Health to come up with a detailed birth plan and a detailed plan of how my baby would die.

Fast forwarding to the day of her birth. I started having contractions around 10:30pm on March 4th. We made our way to the hospital around 3:30am on March 5th thinking that today was the day that we would have to say goodbye. Frederick Health was incredible – the nurses, doctors, everyone. They set up a room that both of our families could wait in while I was in labor so that my husband and I had our support system steps away. I was so scared, I didn’t want to have her yet, I just wasn’t ready. I wouldn’t let them break my water until they absolutely had to because I couldn’t let go of her. Micah was born at 7:42pm (my best friend Amanda’s guess was 7:41pm) on March 5th. She was 6lbs 3oz and 19 ¼” and she came out crying. Something we were told probably would not happen, I got to hear my baby cry. The first ten minutes were touch and go, we talked to her while she laid on me and told her about all the people who were there that wanted to meet her, but that it was OK if she couldn’t stay because there were also a lot of people waiting for her in heaven that I know would take good care of her. She started to breathe again, and she opened her eyes. By 8:05 (at least I think – that’s when the first picture was taken) I was sitting up in my bed, with our ALIVE and very alert baby surrounded by our parents and all our siblings. Everything I had prayed for, for weeks leading up to this day was happening – our family got to meet our daughter alive. Everyone passed her around, she looked at everyone with intent and curiosity. Her eyes were wide open for the first few hours after birth, she was just taking it all in. I had constant messages from my two best friends Amanda and Dana. Dana and her family sent my entire family tons of food for dinner that night, her mom Dina was in constant contact with my mom, which I know my mom was super grateful for. My uncle Mike camped out in the parking lot, bringing coffee, food, and support.

Micah never left anyone’s arms throughout our time in Frederick, she even slept in my arms that night. About 16 hours later she was still fighting, and so we changed our plan. We were told she wouldn’t live longer than an hour if we were lucky, so we needed a second opinion now that she was here. She was flown from Frederick Health to Children’s in DC, getting her transferred into the helicopter incubator was horrific. She quickly took a turn for the worse because she did not have a good reaction to the medication they needed to start her on, they worked on her for about an hour because she stopped breathing about 3 times. The NICU staff at Frederick health were amazing, Micah had like 15+ strangers surrounding her praying and hoping with us that she would get through this. They were finally able to get her stable enough to transfer her, Daniel went with her on the helicopter with the Children’s team, and I got an early discharge then my parents drove me down to Children’s. She spent almost two days at Children’s, and we were able to sleep in her room with her. On March 8th, which was her original due date, we decided we had to let her go. She just looked so tired, and her condition was quickly deteriorating. She died in my arms within a few minutes of being taken off her breathing support at 3:14pm with her dad and grandparents surrounding her. My husband and I took some time to say goodbye, get her cleaned up and changed, and walked her down to the morgue elevators to kiss her soft, sweet face, and say our final goodbyes. It was the saddest, most beautiful, most peaceful day. She was so ready to go, I just know she held on because we wanted her to.

We had a service for her on March 11th. So many people came to support us and our families and to send Micah off. It was a tough day that is still a blur, but I know it was beautiful. I got through the family and friends gathering like a zombie, then we went to the burial. It was cold but sunny, and the bagpipes played special songs. The deacon spoke, my sister-in-law read a poem, and my niece read her letter to Micah. As beautiful as it could be it was the second worst day of my life.

How did you deal with your anticipatory grief leading up to your delivery?

I think the grieving started early on. It began with grieving the life I wanted for my daughter, knowing that she would be dealing with major health complications for the rest of her life. Even before we got the news about her lung condition, I had a feeling that we weren’t bringing a baby home. I just had a feeling that our time was going to be short with her. I think I avoided the grief for the remainder of my pregnancy for the most part because I wanted to enjoy being her mom while I could, and while she was safe with me. I did go on Zoloft for the last 3-4 weeks of my pregnancy because the anxiety was becoming unbearable to the point, I was having nightmares about what was to come. But I will say, the medication is a band aid. It works to get you through a moment, but really should be accompanied by therapy or other coping mechanisms that work for you.

I loved being pregnant with Micah, I feel like I was able to mother her during those final months so I just put my grief aside as best as I could. My husband was hit hard with the anticipatory grief, so I was able to keep it together during those months and support him, then once Micah was born the roles reversed. There were just things I chose to avoid- I couldn’t even talk about funeral arrangements. Even though I knew that was something that probably needed to be taken care of I just couldn’t. So, our parents did, which makes me emotional every time I talk about it. They had a dress made for Micah to be buried in with my wedding dress fabric, they took care of finding where her resting place would be, picked out a tiny little casket. Pretty much every detail had been taken care of, which breaks my heart that they had to do that, but I am so grateful that they did.

I just had a lot of anxiety leading up to the delivery, and many days that I would break down. I think part of my coping was staying a little bit in denial, so I think I just put the grief on a shelf knowing that it was going to be there waiting for me when the time came.