As written by Jenny-
As I sit here and think about our journey with Leah, LOVE fills me and I am surrounded by the unconditional love we have for our daughter. We want to raise awareness on Hypoplastic Left Heart Syndrome (HLHS), Diagrammatic Hernias, and Infant loss, but more than anything else, we hope to help others understand that no label will ever (encompass) the value of Leah’s life or explain the impact her loss has had on our family. She is still a vital part of our family and her life has shaped who we are today. I’m Jenny, and this is our story.
On 5/21/11, I found out we were pregnant. Marc and I were scared because we had miscarried once before. It was a while before we could see the doctor, but I felt good and had no sickness, just fatigue. I was already showing such a cute little belly. We choose to do the 1st trimester screening so we could see our baby and its heartbeat.
At 13 weeks, we did the Nuchal Translucency Test. All we could focus on was the heartbeat and felt that if that was strong, there was nothing else to worry about. As soon as they started the test, we heard it. WOW! Seeing the ultrasound, I was amazed by how much I already loved this little baby. Then they let us know we were having a little girl. I was so happy. I was a mommy!
Then everything stopped. I could tell by the look on the nurse’s face. I didn’t understand everything that was being said, but I knew enough that my heart was breaking. With tears streaming down my face, I listened as they told me that Leah had a thick Nuchal fold, which could mean Down Syndrome, Trisomy 13 or 18 (both fatal), or other defects. We began asking a million questions, but nothing was certain except that our baby would have a birth defect.
I knew we faced a challenge, but we could handle it. The news didn’t change the fact that this little girl is ours and she is greatly loved. Through the fear and uncertainty, Marc and I held each other. Terminating the pregnancy, as they suggested, was never an option. No matter what lay ahead, she was not disposable and she deserves all of our love and protection.
We choose Leah Naomi Fujinami for her name. I was still feeling good, staying hungry and was already wearing maternity clothing. I really was enjoying being pregnant.<
At 15 weeks, we had an amniocentesis. A week later we found out that the results showed NO chromosomal defect! Hearing that Baby Leah was okay gave Marc and I so much joy! The doctor still wanted to check for a possible hernia, but now that there was no chromosomal defect, we were filled with relief.
On August 18, 2011 at 18 weeks, we drove to Denver for an ultrasound. Once again, the information was overwhelming. The doctor began explaining that Leah’s heart was bad. She had a Diagrammatic Hernia, meaning that her stomach was in her chest cavity along, with other organs, due to a hole in her diaphragm. We were rushed to Children’s Hospital for a Fetal Echo by a heart specialist. We watched Leah on the screen and she was so active. As she would put her arm in front of the machine, I just kept thinking about how alive she is and how much I already love her.
The ultrasound lasted a long time, with doctors coming in and out, including the head of Fetal Cardiology. Everything was so confusing and we were not getting any answers that we could understand. After being taken to another room, the doctor explained how Leah’s heart compared to a normal heart. She had Hypoplastic Left Heart Syndrome. The left side of her heart was not there. Four major heart surgeries and a heart transplant would be required to fix HLHS. Most babies can’t survive major heart surgeries. Leah’s heart was sitting on the right side of her chest and pushing that lung down, causing it to be under formed. All of this was in addition to the Diagrammatic Hernia. To fix the heart she needed good strong lungs and to fix the hernia she needed a good strong heart. This was a no win situation. When we asked what her chance of survival was, he looked at us and told us honestly, “not good, one percent.”
I lost it as Marc held me and the doctor tried to comfort us. I was prepared for everything but that. Our daughter would not survive. I would not raise my baby girl. We were devastated! He told us to come back in the morning to meet other specialists and told us that we could consider terminating the pregnancy. Again, we said NO. She is our baby even if she only has a one percent chance we need to give her that chance. It felt like a horrible dream.
The next day, the day before our 7 year anniversary, we went back. We were met by a team of doctors explaining each scenario and informing us that Leah was not a candidate for surgery because of both conditions. They told us that each defect is rare and that only four other babies have ever had both in the United States. All four passed away.
Our options were to terminate or proceed with comfort care and see what happens after delivery. They explained the horrible details of the abortion procedure and it is something that Marc and I could not do to our child. We chose comfort care. I would carry to term and after she was born, we would let her pass. Within me, Leah was not using her lungs or heart, and could survive. If this was the only life she would have, then it would be the best and she would know nothing but LOVE. We built our hope off the one percent chance offered. As her parents, we needed to protect her and to give her the best chance we could.
It was a beautiful tragedy. I was pregnant with a precious, wonderful baby girl that would not survive. We moved forward with the pregnancy and I continued getting bigger. I loved being pregnant and more than anything, we loved Leah and each other. I wanted to treasure every minute I had with her, rarely taking my hand from my belly, enjoying each of the little movements that had begun. I was heartbroken, this can’t be real, things like this don’t happen.
I began a new journey with GOD and found Jesus in my heart. At work, we prayed for Leah. We started going to church and wanted to build our new life with Jesus. Leah was in our lives for a reason and a very special reason. We had heard stories of miracle babies and we prayed that we would get a miracle. I wanted answers. Why us? Did I make one too many mistakes growing up? Did I not deserve to keep Leah? Over time, I began asking Jesus for comfort for us all and protection for Leah.
On September 15, 2011, we went back to Denver to see if anything had changed. It was worse. Her pulmonary valve did not work. I was certain that Leah would be a miracle baby. At this visit, I felt like all hope was gone all we could do was to prepare for the inevitable death of our sweet baby girl. However, her life was not yet over. We still had several months with Leah and we needed to be positive and strong for our baby. Leah was just like her mommy, was stubborn as hell, and would not give up without a fight. Neither would I.
Our days were filled with Leah. We would tell her how much we loved her, tell her about us, and prayed for her daily. Marc would talk to her and say “Be strong and know that we love you.” Because of our many ultrasounds, we were able to see that Leah looked just like her Daddy and had tons of hair. She was most active at night and would kick so hard and so much that Marc and I could not stop laughing. It seemed like she was telling us she was strong! I never missed a kick or a roll and each movement brought us all closer together.
At our ultrasounds, she always had a good strong heartbeat and stubbornly kept her hands in front of her face. Of course, when she did move them, we saw how beautiful she was and she did look just like her daddy. Once, she would not move her hands during an ultrasound and Alicia, our ultrasound tech, was pushing on my belly so we could see her face. Leah moved her hands, turned her face, and stuck out her tongue. We were all laughing so hard and Alicia said “that little turd.” Marc said, “She gets that from her mommy.” That was fine with me. She was going to be a fighter, just like me.
Leah had rhythm and loved music. She especially seemed to like Lady Gaga and at Christmas time, we enjoyed carols together. I was still feeling good without swelling or sickness. I was feeling very sad and heartbroken that the pregnancy was going to end, because I knew what would come when it was time. I had been planning things for a funeral and all the events surrounding Leah’s birth and passing. While others Moms are planning baby showers, I was planning what could be the only moments I have with Leah.
I ordered an urn and it was such an awful feeling. We received plaster castings for Leah’s hands and feet. I picked special songs for her, bought the only outfit Leah would ever wear, and got the only blanket I would snuggle her in. I met Carolyn from Now I Lay Me Down to Sleep, who would take our pictures. I met Sara and she would be our support. I was reading books on How to Survive the Death of your Baby not How to be the best Parent. It felt like someone was slowly ripping my heart out and I just had to wait.
I loved the time that Leah and I were spending together. I would read her “Love you Forever.” “I will love you forever, like you for always, as long as I am living my baby you will be.” How perfect for us. I also read her “Baby Heaven” so she would know how wonderful heaven will be for her. We did not want to give up hope and prayed for a miracle every day. We wanted God to give us a miracle, though Leah was a miracle to us already. We stayed positive that something good was going to happen. We needed to stay strong for Leah and be strong parents. We had no idea how we could get through this or how to survive this, but we needed to for our Leah.
My parents came to town so that they could be here when Leah was born. On December 28th 2011, I had a strange feeling in my stomach that something was going to happen. That night, Leah was very active and we fell asleep holding my belly and feeling her move. I was nervous because her due date, January 8, was quickly approaching. Usually during the night, Leah would move around a lot and, if I got up, she would shift around. That night, she didn’t and I was so scared that something was wrong.
We played music for her, talked to her, and I sat and cried. I still remember Rascal Flatts playing on the radio on our way to have a non-stress test done. I sat in the car waiting for Leah to move. Every few seconds, Marc would ask “Do you feel her?” I cried the entire ride there, though Marc tried very hard to keep me calm. Once we saw her heartbeat, I felt so relieved. However, there was still no movement.
The doctors gave me juice and after she still didn’t move, they did an ultrasound. Her heart was beating, but she was not moving. Leah looked like she was sleeping, and kept one hand in front of her face, as if saying, “I am done.” After thirty minutes, there was still no movement. All my dreams; of seeing her walk, saying MAMA, having her hug us, dressing her up, snuggling with her, and watching her grow up; they were gone. Marc would never walk her down the aisle and keep her safe from boys. His dreams were gone. I felt that I failed Leah. As her mother, I should have been able to protect her and keep her safe. However, Leah knew our love for her and that we would have done anything to keep her and protect her.
They decided that it was time. I burst into tears, because I knew what would happen. I couldn’t lose her. She was still in me and doing fine. I prayed that God would take me instead of her. Marc needed Leah and she needed to live. Why is this happening?
I called everyone to come to the hospital. After Carolyn and Sara arrived, the hospital admitted us at 1:30 pm. Though I was so afraid and crying, contractions came and we were able to hear Leah’s heart beating for 2 hours. Friends and family continued to arrive. The nurses let me know that the doctor would soon start induction using gel. Everyone left the room so that I could use the bathroom. When I came back, I was alone with Leah. I lifted my blankets and told her how much I love her and that everything would be ok.
The nurse came in and told me that, during the last contraction, Leah’s heart rate dropped very low. They were quickly trying to find it and could hear it faintly. Marc came in with Carolyn and I told them what was happening. This was my worse fear. The nurses told me Leah was Sunny side up which can make it hard to find the heart beat. Carolyn was next to me saying “Come on Leah! Come On!”
Marc held my hand as they told us they could no longer find her heart beat and mine stopped. I was shattered. I wanted God to take me instead of Leah. I was ready to go in her place.
Leah went to Heaven at 3:30 pm on December 29, 2011. Leah was gone and I wanted to die. She was still in me and needed me to be strong. We told our family and friends and everyone cried with us. Their grandbaby, niece and friend was gone and the baby we so badly longed for and needed in our lives was gone.Our family prayed with us and asked for comfort and guidance for Leah’s journey to her new home.I was not going to see Leah alive. I would not hear her cry or see her eyes. Marc would never feel her grab his finger.
We continued the induction and it was a long 30 hours. Our family and friends stayed with us all night, talking and being with one another as family. Everyone felt Leah’ loss. Our family and friends watched us through this journey and were part of this with us.
As time went by, I was getting more and more frustrated that nothing seemed to be happening. They had broken my water earlier that day and I had already gone through several bags of Pitocin. Then, at about 7:00pm, I could feel the pressure in my hips and more pain began that the Epidural could not cover. The doctor came in and said it is time. Fear set in and I felt horrible. I could not do this. Leah was already in heaven and this just seemed like a nightmare. With Sara and Tara at my feet, Katie at my left leg, my mom at my right leg, Marc on my left side, Carolyn taking pictures, and Nurse Jamie on my right I began pushing as everyone encouraged and coached me through it. I could not do the last push. I was so scared and was not supposed to push out Leah sleeping. She was supposed to cry and she wouldn’t. I was so shattered that this was the ending of my pregnancy with Leah.
I pushed and pulled her onto my chest. Leah was born sleeping at 8:46pm on December 30th, 2011. She was five pounds, ten ounces and eighteen inches long. Leah was here and beautiful and already an Angel. She was so soft and had beautiful dark hair. She had our nose, Marc’s cheeks, my long fingers and toes. Leah had big hands and big feet. I loved how perfectly round her cheeks were and she had cute little eyelashes. Her lips were dark and so were her finger nails. It made her look girly like she had painted nails and was wearing lipstick. She was so precious. I kissed her and pressed her face to mine. Leah was beautiful and amazing.<
We had pictures taken by Carolyn, castings made of her hands and feet, locks of hair taken, and stamps. We held her tight, kissing and hugging our daughter, memorizing every inch of her, holding her hands and feet, kissing her hands and putting her hands against our face. I would touch her nose to my nose and wanted to keep her warm. Marc dressed her in her one outfit and her Uncles made her castings.Marc’s brother, Todd, baptized Leah. Our family and friends prayed with us and they all shared a moment with Leah either holding her or sitting with us. I waited for her to cry or move.
I did look at Leah’s eyes, I needed to see what they looked like. They were gray and beautiful. Leah was a sweet girl and everyone knows that. The bond that she and I have will never be taken away. Her bond with her daddy is priceless. We rocked her and talked to her. We spent 6 amazing hours with Leah and shared very precious moments with her that will last a lifetime for us.
When the funeral home came and took her away. I wanted to chase him down the hall and get her back.
We had a beautiful service for Leah with lots of beautiful flowers, beautiful music, and beautiful readings. Leah’s urn is in our guest room surrounded by stuffed bunnies. Our symbol for her is bunnies and, whenever we see one, we think of Leah.
This is a pain that nobody should ever have to feel and it is something that I would not trade for anything. I would not go back in time and terminate. I am so grateful for the 39 weeks that we shared with Leah. She changed our lives forever! We have met some of the most amazing people in this journey. We have become different people and cherish life more, because we know how fragile it is.
We must now move forward. We will never forget our angel and we will never let the world forget Leah. It is hard for us to understand why this happened. We know that God has a plan and he did not do this to be mean to us. We are Leah’s mommy and daddy and we love Leah more than anything and that’s all she will ever know. Everyone that met us and was a part of our pregnancy loved Leah and she will always know that. She is watching us all from Heaven.