A MIRACLE FROM THE BEGINNING
From a young age, I have been told more than once that I would have tremendous difficulty getting pregnant. I was married at 21 and divorced at 29, and in that time, I never got pregnant. After deciding that I was okay with never having children, I met my current husband. My husband has a seven-year-old little girl named Cat, and I adore her. Luckily, she feels the same towards me. I knew that getting to be a part of her life would be enough for me.
My husband and I were married 3 years after we started dating, and he is the love of my life. After getting married, I decided to stop using birth control because the hormones were bad for me. Five months later, on February 26, 2018, I found out that I was pregnant. Despite intense exhaustion- which I attributed to the fun and busy time spent with Cat during her visit- I did not expect to be pregnant.
I stopped on my way home from work to get a pregnancy test. Now, I’ve imagined this moment my whole adult life, and what I thought would be a certified tear-fest ended up just being me, standing in my bathroom, laughing hysterically, holding a positive pregnancy test. I was in such shock that I could even get pregnant that I just laughed.
Liam was a miracle and a joy from the beginning.
RECEIVING THE DIAGNOSIS
The first trimester of my pregnancy was great. I had very little morning sickness and a little back pain, but I was elated to be expecting our son. During our 13-week scan, the sonographer said though she couldn’t see 100%, she was pretty sure that his nuchal translucency looked normal and that he was okay.
During our 20-week anatomy scan, we were told, in the most nonchalant manner, that our son had Hydrops Hetalis, Cystic Hygroma, and Pleural Effusion surrounding his lungs. His doctor offered no explanation and no information other than “we will need to monitor you weekly from now on.”
Each appointment after that was incredibly frustrating and infuriating. They still offered no explanation as to what the diagnosis was and meant. They simply told us that he had it. I immediately began to research the diagnosis, and I wished that I had asked more questions during our ultrasound and conversations with our doctors. I was so confused by the diagnosis, especially since both of our earlier genetic tests and screens had come back negative for any anomalies.
I didn’t understand why this was happening to us and our son. The doctors offered me an amniocentesis, which I declined. At that point, the amniocentesis was being used as a tool to decide whether or not we should terminate the pregnancy. Termination was not an option for us, and no test result was going to change my mind.
A NEW TEAM OF DOCTORS
Finally, at 24 weeks’ gestation, I was referred to a cardiologist to do a fetal echocardiogram, and we learned that Liam had a hole in his heart. After the scan, the cardiologist said, “I never tell my patients this, but I suggest you get a second opinion from another Maternal-Fetal Medicine physician.”
Taking his advice, I started over, finding a new obstetrician and perinatologist, both of whom I love. Equipped with a new team of doctors, things became clearer to me. I knew that this was serious, but despite my son having a 5% chance of living, I knew that miracles happened all the time.
My doctors gave me a clear treatment plan, and I read hundreds of articles about babies with birth defects and issues with breathing problems, heart problems, feeding issues, and anything else that might come with this diagnosis. I asked hundreds of questions on message boards, and I started to prepare my family for the possibilities, good and bad, by explaining what the diagnosis meant and what came with it.
I researched and joined an online support group. I read beautiful success stories of babies with Hydrops Fetalis who survived and had issues that resolved over time. That was all I could think to do since anyone I asked had no clue what Hydrops Fetalis even was. These stories strengthened my resolve, and I was more adamant than ever that as long as my son had a heartbeat, I was going to give him every opportunity possible to survive.
CARRYING OUR STRONG BOY AND AN UNEXPECTED TURN OF EVENTS
By 25 weeks gestation, Liam’s hygroma had grown, and I developed Polyhydramnios, or an excess of amniotic fluid in the amniotic sac. Over the next weeks, the doctors played the constant game of “where are my fluid levels today?”
During one appointment, we heard Liam’s heartbeat, and it was thunderous! He was strong! At that moment, we decided to let Liam dictate how things were going to happen.
At 31 weeks gestation, I went into the hospital for steroid injections because Liam wasn’t growing. He was measuring a month behind. I also started to experience elevated blood pressure, and I developed gestational hypertension.
At 31 weeks and 6 days gestation, on August 30th, 2018, my blood pressure was very elevated, and my fluid levels were extremely high. The doctor also told us there was an interruption in Liam’s umbilical Doppler, meaning that Liam needed to be delivered immediately. He told us it would be safer for Liam to be delivered rather than stay inside.
Following this news, I was immediately admitted to the hospital, and they scheduled a C-section for the following morning.
BECOMING A MOTHER
Liam was born via C-section on August 31, 2018. It all seemed like such a blur. There was a lot of talking, movement, and “come here, go there, take this, wear that.” During the C-section, I was made very comfortable by everyone, and I heard a lot of “everything is going to be okay.”
My decision to carry to term was 100% supported by my family, and my husband and one of my sisters were with me for the entirety of Liam’s delivery. Liam’s birth was perfect in that we were surrounded by people who love and support us.
Immediately following his birth, Liam was whisked away to the neonatal intensive care unit with my husband following him. As he left, I begged him to stay strong for his mama. I saw his big, beautiful eyes, and I felt relief. At that moment, I became a mother. I am his mother. My son was beautiful.
Following my C-section, I was nauseated and couldn’t stop throwing up, so I only got to see Liam for 10 minutes before I was sent back to my room. My husband stayed with Liam in the NICU while I was sent to recovery.
I didn’t get to see Liam again until the following morning at 2:43 am, when he passed away.
SAYING GOODBYE TO MY MIRACLE
I received a call telling me that Liam was coding. They told me that I needed to come down to the NICU immediately. The wheels on my wheelchair didn’t roll fast enough. I was desperate to make it in time, to touch him one last time. I desperately wanted to see his face and see life in his eyes once last time, but I didn’t get that chance. Liam passed away thirty seconds before I arrived. I held him close and smelled his little head. Liam looked like me.
The hospital and our care team were amazing. The neonatal intensive care unit gave us a memory box containing his hospital blanket, his little newborn hat, a lock of his hair, two sets of footprints, and a little handprint.
THE POWER OF SUPPORT
I felt support throughout my entire pregnancy. I never felt alone, and I never felt abandoned or left to my own defense. One of the many things I am grateful for is the amount of support I received from my family and close friends, especially my office. I have felt so eternally blessed by my bosses and staff.
Mothers who go through this know the amount of time off we have to take to make sure our babies are okay. Never once did I feel scared or fear termination from my job while pregnant. It made things a lot easier to not have to worry about being let go from a job that I love for something that I have no control over. It lifted a huge weight off my shoulders.
My family was incredible, too, and we mourned the loss of Liam together. We are a family of faith, we knew that we were handed a curveball and had to adjust accordingly. My grandmother has knitted blankets for all of her grandchildren and great-grandchildren, and Liam was no exception. It was worrisome to her to give it to me since I wouldn’t have the joy of wrapping him in it, but I wanted it just the same. It was meant for him, and I keep it safe and close to me at all times.
CARRYING LIAM CHANGED EVERYTHING
Our decision to carry to term has changed our lives immeasurably. Though I finally knew what it felt like to carry a child, I would not have known the joy of being a mother had I not carried to term. I started to feel better when we were able to take Liam’s urn home from the funeral home. Having him with me brought me peace. In his short life, he taught me patience, and he restored my faith in our Lord and Savior.
I encourage all mommies to fight. Fight as long as your baby is fighting. There are so many uncertainties, and medicine has come a very long way and continues to forge forward every day. What is known today about Hydrops Fetalis and Cystic Hygromas can change in a matter of months. As long as your baby has a heartbeat and is not suffering in any way, consider bonding with your child throughout your pregnancy. You will have no regrets, and regrets can be impossible to live with.
I’ve learned more in the last 10 months about love, forgiveness, and patience than my whole life had taught me, and had I not carried to term, I don’t think I would have appreciated this life lesson. Liam will forever be my miracle love.