A few days ago, I was at the gym and saw a woman I recognized, but couldn’t remember how. I heard her mention that she was going to “go light” because she had a baby in May and was still getting back to working out. I then realized that we had worked out together a few times while pregnant. (Actually, I think the last time I saw her she was pumping out pull-ups while prego – badass!) I told her that I had had a baby too, just a month after her, and was getting back to working out as well. She was so friendly and asked about my baby. It felt refreshing just to chat like a regular mom for once. I told her I had a little boy and his name was Luca. I knew that this could become awkward if we continued this conversation, but I selfishly went on because I wanted to talk about Luca. I was excited that I could talk about my baby. Finally, she said, “He must be getting to such a fun age now!” My heart stopped. After pausing, I replied, “I’m sorry to tell you this, but my baby actually passed away. But, it’s okay, because you really made my day by allowing me to talk about him. So, thank you.” She was obviously shocked, but she looked at me and said she was so glad that I could be with him for the brief time he was here on earth. It meant so much to me that she was willing to talk to me and hear about him and not run from the conversation. So many people are just horrified when they find out what happened, have no idea what to say, and end the conversation quickly and walk away. I appreciate anyone who is willing to let themselves be uncomfortable for a few minutes and listen to me talk about my son, because the discomfort I feel is for a lifetime.
At 25 weeks, we went to our doctor for our last checkup before my husband was to deploy a few days later. In the U.S. (or at least at the military hospital here), most pregnant women have a big ultrasound around 20 weeks (the anatomy scan, of course!); however, our Japanese clinic does a comprehensive ultrasound around 25 weeks. We were very excited to hopefully find out the gender before my husband had to leave for awhile. The subject of gender during my pregnancy was always kind of funny (and frustrating) because my doctor NEVER wanted to give me a straight answer. She always said, “Maybe boy!” This frustrated me to no end, since I am such a planner and needed to know!!! I needed to pick out nursery colors!!! Come on!!! My husband would always fight back his laughter when Dr. Fumi answered. One time I asked her, “Well, when will we know for sure?” She answered, “The day of the birth!” When talking to my Japanese friends and those who knew Dr. Fumi, they said that this is what she always said, most likely because she did not want to take the chance of being wrong… and that even if she said “maybe,” it meant that she was pretty sure. Another Japanese friend told me that when she was pregnant years ago, she asked to find out about the gender, but the doctor refused, saying that it was basically disrespectful to the baby’s spirit to be asking that question before the birth. So interesting, yet so frustrating!
Out exploring at 24 weeks
Our appointment was going well. We saw our midwives first, and then were eventually called for our ultrasound with Dr. Fumi. Honestly, the only thing on my mind was excitement and seeing our baby on the ultrasound and hopefully confirming the gender. Dr. Fumi was always very quiet and serious about her work, so it was not alarming when she acted that way and took a long time scanning me, particularly since this was scheduled to be a longer ultrasound. I’m no doctor and barely ever knew what I was looking at on the screen, but after some time it occurred to me that she was spending a very long time looking at his heart. I asked her if everything was okay – fully expecting her to say yes. After a very long pause, she said, “I think there is an abnormality with baby’s heart.” My own heart stopped and I felt like all of the blood was draining from my body. I do not remember what I said next, but that I was crying and felt like I was having a panic attack. Dr. Fumi said, “I want you to see a pediatric cardiologist.” She told me not to worry and that she didn’t know for sure that something was wrong, but she wanted to check and be on the safe side. So many things were running through my mind. I had no idea how serious the problem could be. My husband was leaving in just a few days. I was leaving to go visit our families in the U.S. a few days after that. I told all of this to Dr. Fumi. She said, “If I were you, I would go see a doctor in the U.S.” Okinawa is a very tiny island. There is only one pediatric cardiologist on island and she is Japanese. I only had three business days to try to get in and see her and naturally she was extremely busy. Dr. Fumi tried her best to get me an appointment and she told me the doctor agreed to see me a few days later on her lunch hour, because that was the only time she had available. However, my translators were not available at that time and the big hospital I would be going to was all Japanese. I spent an entire day frantically trying to find someone to come with me and translate and finally a friend said she could come with me. That night, my husband and I went out to dinner with some friends and I got a call from Dr. Fumi in the middle of dinner saying that she was sorry, but the cardiologist cancelled my appointment, because they were not confident that my American military health insurance would pay the bill. I was devastated, but there was nothing I could do. I didn’t have time to fight it. We immediately went to plan B, which was to see a doctor in the U.S. My parents had already been working on setting up that appointment and through family connections and the grace of God, we had an appointment a week and a half later at Boston Children’s Hospital – the number one ranked children’s hospital in the U.S., and specifically, the number one pediatric cardiac and cardiac surgical center in the U.S. While this was great news, a week and a half seemed like an absolute eternity for me. I needed to know NOW if something was really wrong, but we had to wait.
I spent those last few days before my trip to the U.S. gathering my medical records and my doctor was able to translate her suspected diagnosis into English. I read her note and it said “hypoplastic left heart syndrome” (HLHS). My husband begged me to stop reading online. He tried to convince me to not worry because we didn’t know anything for sure yet, but I couldn’t help myself. When I researched, it said that HLHS was rare and the most serious of congenital heart defects, requiring multiple surgeries just after birth. I tried not to think about it, but I was so worried. It was “rare,” so it couldn’t possibly happen to us. Meanwhile, my friends were asking me how the appointment was… what was my nursery theme… did we find out the gender yet? I wanted to scream. None of that mattered anymore. I just wanted a healthy baby.
That weekend, my husband deployed. We really had no other option. We did not have proof that anything was wrong with our baby and we doubted that someone could replace him just days before a deployment. It was one of the hardest goodbyes I’ve ever had with him. I packed and a few days later flew to New York City. My sisters and mom met me there and we spent the weekend shopping and sightseeing. They wanted so badly to cheer me up, but I was always worrying in the back of my mind. It was beautiful cool spring weather and it did help to have that time with them when I couldn’t be with my husband.
My grandfather was not well at the time, so I was glad to arrive to Connecticut and visit him finally. He was 92 years old and the most wonderful, happy, uplifting person in my life. He has always been so special to me and even walked me down the aisle on my wedding day. I was so glad to see him, but also shocked because I had not realized how sick he truly was until I got home. Cancer had taken over his body, and my family hadn’t wanted to tell me how bad his health was, since it had happened when I was dealing with my own bad news. When I finally saw him, we had the most wonderful visit. His mind was as sharp as ever and he was so excited to see my big belly and know he would be a great grandfather. He said he wanted his great grandson to call him “G-G” – short for great grandfather. So cute. My husband was even able to FaceTime us and say hello. I kissed him goodbye and said I would be back soon. I was looking forward to spending a lot of time with him during my visit. Less than two days later he passed away peacefully. I was so sad, but also thanked God for giving me one last opportunity to spend time with him. My mom said that before I arrived, he would ask her nearly every day, “When is Jessi arriving?” My other family members had flown to CT to see him too. He waited for everyone to get there to see him and then passed away right after. He had a long life filled with love and I am so blessed to have him as my grandfather. I miss him every day and know that he would have been a tremendous source of comfort to me during this time as he lost his own young son. It makes me happy to imagine him with Luca now… reading him Dr. Seuss books, of course! 🙂
The day after my grandfather passed away I headed to Boston for my appointment. My amazing mother came with me. She was already dealing with the passing of her father, not to mention my sisters were in school, but she insisted on going with me. We took the train two hours to Boston and I was both nervous and a little bit relieved that finally I could get some answers. I would try to convince myself that everything was fine and this was probably all a mistake. Dr. Fumi was just being conservative and the Boston doctors would say, “Your baby is fine!” I prayed and prayed. I rubbed my belly and told my baby I loved him and that we would be okay. We checked into a hotel that night and the next morning called our minister and prayed with him before heading to the hospital.
When we arrived, I could not believe how enormous the hospital was. At first glance, I probably saw 20 different nationalities – people who had traveled from across the world, like me, to come here. My appointment was at the Advanced Fetal Care Center. I was scheduled for a 90 minute fetal echocardiogram – basically an ultrasound where they can zoom in on the baby’s heart. They take (what seemed like) a thousand images from different angles to see every possible view of baby’s heart. They were so nice and put me at ease chatting with me and asking about the baby. It also involved some waiting as Luca was not always cooperative. At one point, he actually put his hand over his heart – not helpful! My patriotic little baby! My husband was texting when he could to see if we had any updates. As they were finishing, I asked them what they thought. The doctor told me he believed my baby had some variant of HLHS, but that another doctor would meet with us shortly to discuss everything after he looked through the images some more. I was devastated and began to cry, but tried to keep it together. I knew from my research that this was survivable and that I had to be strong for my baby and for my husband who was so far away. I didn’t want him to worry about me more than he already was. The doctor came in and after multiple attempts we were able to get my husband on the phone from his deployed location. He began to explain to us what was wrong with our baby’s heart.
He drew pictures on a white board of the heart and explained that our baby’s condition was extremely serious, but that we were in the best possible place to treat him. Our baby had single ventricle heart disease and a HLHS variant. Really no heart is the same as another, so it’s hard to fit these diagnoses into one name or definition. It’s difficult to remember all of the details of the conversation now, but I remember him saying that there were something like eight pediatric cardiologists at Boston Children’s and over the course of the rest of my pregnancy, they would continue to look at baby’s heart and determine the best course of action, which included determining which cardiologist was the best match to operate on our baby based on their particular area of expertise. It simply blew my mind to listen to these doctors explain the ins and out of a tiny baby’s little heart the size of a grape. It was so far above my head, yet I felt very confident that they would take care of us. The doctor said that it would not just be him taking care of our son, it would be an entire “village” of people between the two hospitals: Boston Children’s and Brigham and Women’s Hospital next door. He said we would get to know them all very well and we would all be a team together. I would have the baby at Brigham and Women’s and then we would be transferred to Boston Children’s shortly after for the surgery and six to eight weeks of recovery. He was also very real with us about the facts – one third of babies with this heart problem do not survive to see their third birthday. At least three open heart surgeries were required during the first two years of life, the first one occurring just days after birth.
After some time, my husband had to get off the phone and go to work. My mom and I continued to ask questions, but the doctor told us it was best to take a break and let all of this sink in. He didn’t want to overwhelm us with too much information in one day, because it was a lot to handle. We agreed and scheduled another appointment two weeks later for more testing and for me to meet my doctors at the adjacent hospital. That afternoon we headed home to CT.
I have to pause as I tell Luca’s story because it is an emotional one to tell and cannot be told in one post. If you have read this far, thank you. It is impossible tell his story in few words, because so much happened during his little life, so I will take my time and continue as i can. As I write, the emotions from those days come back to me. But, it is very healing and I truly hope that perhaps Luca’s story will reach someone else going through something similar and let them know that they are not alone.
I’ve really felt Luca’s presence over the past two days. It makes me so happy to feel him with me, but so sad that I cannot actually be with him. Yesterday, it was while practicing yoga overlooking a beautiful sunset and a calm ocean. Today, it was while watching a butterfly while I took a walk.
I need to have that quiet time to be with myself every day or as often as possible. It is then that I am reminded that Luca is with me and God is with me and I will be okay.
I call on the Lord in my distress and He answers me. ~Psalm 120:1