Mary’s Brave Story

Living after The loss of our lovely Daughter, Chloe.

On June 6, 2020, we received the good news of my pregnancy. We became a family of three. We made plans as to how our life would be as new parents. We bought a new house and a bigger car. We planned everything, but we didn’t imagine that the plans would be different for our daughter. My pregnancy was close to perfect, with no sickness. I took good care of my nutrition and exercised regularly. Every prenatal appointment went well, including the genetic screening. We celebrated our daughter’s wellness and prayed every day for her.

After my maternity photoshoot, I noticed that my belly had increased in size compared to the weeks prior. I requested my husband to measure my fundal height at home. The results were so concerning to me. I went to my OBGYN practice and explained my concerns. After a few hours, I convinced them to do an ultrasound. My instinct was right, my amniotic fluid was extremely increased. I had polyhydramnios.

I was scared. I couldn't believe that was happening to me. The pregnancy that seemed to be close to perfect was now a life turned upside down with distress, anxiety, and fear, not knowing what the future held for our dream daughter.

After many NST, amniocentesis, and genetic tests, on January 12th, we decided to induce labor. On January 13th, Chloe was born by natural birth. We knew the possibility of airway obstruction or birth defects but didn't have any diagnosis at that point. I never lost my faith, as I pushed in every contraction, I imagined her face and prayed that the reality was different. Even though my medical brain was on fire trying to look for answers, I knew the real truth, something was not right. My heart was hopeful.

Chloe was taken from us as soon as her dad cut the umbilical cord. She barely breathed, her chronic respiratory failure required cardiopulmonary resuscitation and immediate intubation. I couldn't hold my daughter, I barely saw her face. The day my daughter was born was supposed to be the best of my life but turned into the scariest and hardest of my life.

I am grateful for the incredible team of 10 specialists that held the meeting with me and my husband before the admission to the L&D unit. We were hoping for the best but prepared for the worst which did allow us to have a complete unit ready to do the interventions that Chloe needed. It was God’s miracle.

I had the opportunity to see my daughter 7 hours later, hooked up to countless monitors and wires. I held her tiny hands through the small hole in the incubator. We prayed hard every day and every night trying to comfort ourselves that God was in control. Ten days after her birth we received the diagnosis, “Your daughter was born with Wolf-Hirschhorn Syndrome.” Wolf-Hirschhorn Syndrome is caused by a deletion (missing part) of the short arm of chromosome 4. The incidence is one in 50,000 births and God chose me to be the mother of one.

The missing genetic material results in a characteristic facial appearance, birth defects, and developmental delays. According to medical evidence, pre and postnatal growth retardation, hypotonia, intellectual disability, epilepsy, and congenital fusion anomalies. Chloe had a 36mb deletion, one of the bigger deletions, based on the case reports. The clinical aspects are dependent on the deletion’s size, according to the clinical studies, but Chloe achieved amazing things and was growing and thriving phenomenally. Behind that result was our dedicated and hard work with physical, speech, and occupational therapies. Uncountable appointments, admissions, and emergency situations, like airlifting Chloe to the ICU were our life. Chloe was our priority.

Special needs maternity is a silent maternity where instead of toys everywhere we had medical supplies, oxygen tanks, and suction machines. Besides the ups and downs of having a medically complex daughter, Chloe had a happy life surrounded by love and dedication. We did everything with a heart full of love because our love for Chloe eased all the pain.

Chloe taught us how to fight for our lives through love, patience, and faith. We were there by her side to provide all that she needed to grow until she decided and allowed us, but more importantly, advocating, educating, and spreading awareness for her.

“Chloe had a happy life surrounded by love and dedication. We did everything with a heart full of love because our love for Chloe eased all the pain. Chloe taught us how to fight for our life through love, patience and faith.”

In her short but meaningful life, Chloe was admitted many times to the Intensive Care Unit which requires immediate intubation. The scenarios each time were different, but the words from the ICU intensivist were the same, “prepare for the worst, Chloe won’t resist the extubation”. Every time Chloe fought and won the battle.

On February 8, 2023, we airlifted Chloe to the ICU one more time. This time was different, but my hope and faith in God and Chloe's strength kept me going. I remember the ICU attending physician that worked with us many times before. She knew Chloe so well. She told me, “she’s tired, Mary, do you want us to intubate again?” My answer was, “yes, as many times as we need it and her airway allows us. I just can’t let her go”. I looked into her eyes and said to Chloe, “my baby girl, you have fought so hard before and I know you can do it again.”

She won again, on February 13th we were discharged. We held a meeting with our Palliative Care Team where the goal is to relieve suffering and provide the best possible quality of life, with a diagnosis as WHS Palliative Care is part of our group of specialists. But I never held a meeting with them before this admission, that told me that things were changing.

We choose at-home hospice service with Regional Hospice care that prioritizes comfort and focuses on managing terminally ill patient’s pain and symptoms, plus attending the family's emotional and spiritual needs at the end of life. I had to be strong for Chloe and my family, things needed to get done, I had to arrange every meeting, to provide the best quality of care for Chloe, I was too busy and focused on her that I forgot about my feelings, I was broken in pieces but that wasn't the point, my daughter was referred to Hospice and I need to be there for every decision of the plan of care. Being a physician and a medical complex mom hits you twice, because you never rest. You can not turn your brain off. Our decision was, Chloe will continue with her regular routine at home and meds schedule. The Hospice Nurse will do visits at home but our daughter will always be by our side. Her last month was surrounded by so much love, dedication and of course snuggles.

On March 1st, Chloe had another episode of hypoxia, which is inadequate oxygen delivery to the tissues. Chloe started declining. As before , I never felt ready to say goodbye to my daughter, parents are not supposed to do so, this breaks the natural course of life. Medical complex parents heard that phrase many times, “be prepared for the worst” but we never thought that day would arrive. That requires BRAVERY.

Chloe Crismarie Gonzalez, age 2, passed away peacefully with her parents at her side on March 3, 2023. I found myself holding my daughter's body. I did her hair, beautiful curls, and changed her outfit, not knowing that would be the last time. I was numb that night and the following days, arranging everything for Chloe’s funeral. I wanted to be as beautiful as she was that I barely remember about myself, again Chloe continues to be my priority. Words cannot do justice to what I felt when I left her with the Funeral director, I told him to put her comfy pillows around her. Mom, you that have lost a child, I respect you, and admire your endurance and braveness.

Grief has always been in the different phases of our life. I had to grieve for the daughter that I thought I would have and the idea to go home after giving birth to celebrate with my family. Instead we were in the intensive care unit for 100 days. All those situations needed time to grief and welcome the real life we were facing.

Chloe remains alive in our hearts and world. Death may end a life, but it does not end a relationship. Our bond with Chloe is still present every day of our life. I believe that a child’s death is a family loss, everyone in the family is affected and coping with their own personal sense of loss. The way you express it and experience with grief are different, I found myself missing the child I brought into this world, bone of my bones, flesh of my flesh but I was supporting others. That wasn’t helpful in my own journey. I will tell you that the most important way you can assist those around you is when you begin to take care of yourself.

What I came to realize is that when I opened my ears to listen to the recorded Chloe’s heart beat, and my eyes to see God’s goodness. I also opened my heart to healing knowing she is gone from our sight but never from my heart. I see her in the sunset, in the beautiful rainbow sky.

“I see her in the sunset, in the beautiful rainbow sky.”

It is important to not grieve alone. My husband has been my number one supporter. Besides, we are experiencing individual grief processes, learning that all people grieve differently and there is no “right” or “wrong” way to grieve helped me. As parents we encountered one of the greatest tragedies, the loss of our first born, our daughter, and still being compassionate to each other is the greatest blessing in our relationship. We draw strength and courage from each other. Perhaps at one moment we ask ourselves many questions about why our daughter? Now, we know she was the best chapter of our life and still is.

After a loss, nothing remains the same, you experience second losses and discover a new life, new meaning and new purpose to make the world a better place as a way of continuing bonds with your child. As a physician I was used to seeing pathologies on the other side, as a big wall, where I was the one looking for answers but this time Chloe’s condition broke that wall and I found myself looking for answers at the same time surrounded by pain seeing my daughter suffering. This brought a new perspective of compassion in my personal and professional life. I found my BRAVENESS.

It was the first day of Summer, three Months after the death of my daughter. How was I supposed to cope? Aquatic therapy was booked, I bought a splashy chair to enjoy a dreamy beach day. But the reality was; a visit to my daughter’s grave. The months that followed were hard and silent, Those around you seem to have moved on from the loss that broke you. You will experience a range of emotions, those are completely normal. At that time Journaling was a helpful tool. Keeping a journal allows me to express my feelings and the continuing bond with Chloe, telling her all I wasn’t able to or just how life is going. I may not carry her in my arms but I hold her forever in my heart, allowing me to fully live in spite of the death.

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