GROWING OUR FAMILY
Tara: In April 2018, my husband Matt and I decided it was time to expand our little family. Three years prior, we welcomed our son Grayson into this world and thought the three-year age gap would be ideal for siblings. The day I found out I was pregnant, I remember taking multiple pregnancy tests because, for some reason, I just didn’t believe it was true. Our dreams of having another baby were really happening.
Matt: It took nearly three months to get pregnant, and Tara was starting to become discouraged since we basically got pregnant with our son the first time we tried. When we finally had a positive test, it was a joy and a relief that we wouldn’t continue having our hopes dashed.
FIRST APPOINTMENTS
Tara: Early in the pregnancy, I could tell things were different. I had morning sickness with my first but not to the extent that it was for our second child. I never thought anything of it; I just assumed everything was normal. Besides the sickness, the pregnancy progressed normally. We heard a heartbeat at eight weeks, confirming the pregnancy. Our next appointment was around thirteen weeks with a Maternal-Fetal Medicine specialist, who performed the first anatomy scan.
With our first child, my husband attended all my appointments, and I remember having a conversation with him that I did not need him to take time off work to attend appointments the second time around. During my first anatomy scan, I could tell within minutes that the technician was concerned with what she was seeing. She spent a lot of time looking at our baby’s legs, but I did not see anything wrong at all, it all seemed normal to my untrained eye.
She asked many questions about my first pregnancy – if there had been any issues with the pregnancy or with my son. The reply to all her questions was that everything was fine, with no complications with the pregnancy or our son. At the end of the scan, after reviewing the results, the doctor entered the room. I will never forget the feeling of complete helplessness. She told me she was concerned about our baby’s skeletal development, especially the legs. She thought it looked like arthrogryposis and that I would be referred to the Children’s Hospital of Philadelphia (CHOP) for testing.
I broke down, completely sobbing, thinking about the phone call I would have to make to my husband as I sat in my car and tried to calm myself down enough to drive home. My husband met me at home, where I told him about the appointment, and we held each other and just cried. We did a little research on arthrogryposis, which is congenital joint contracture in two or more areas of the body. Often, these cases are treatable, and surgeries have been successful. We were looking at the positives, and we knew it did not matter because we would love our child no matter what the outcome.
Matt: I remember the call very vividly. I had only been at my new job for about six months and didn’t have much time off, which is why I didn’t attend the appointments with Tara. I had taken a break with a couple of my co-workers in the café, grabbing a coffee and expecting a phone call or text soon from Tara to tell me about the appointment. When she did call, it was a complete blindside. My adrenaline spiked as I heard her immediately break down over the phone and start to explain what the doctor had told her. I immediately started my way toward my desk to grab my stuff and head straight home. I ran into my boss on the way and told him that I needed to leave and that there were problems with our baby.
The next day we had an early appointment for a chorionic villus sampling (CBS) and to meet with a genetic counselor. The CVS would be used to detect if our baby had any birth defects, genetic diseases, or other problems.
AN UNEXPECTED DIAGNOSIS
While waiting for the CVS results, we had our first appointment at CHOP at seventeen weeks. It was a full-day appointment that included an echocardiogram, an ultrasound, genetic counseling, and general counseling. The echo was first; our baby’s heart was perfect. Next came the ultrasound, which was two and a half hours of pushing on my belly, trying to get photos of our baby’s bone development from head to toe. Then came the genetic counseling to talk about our family history and potential options for further testing once the CVS test results came back.
During the last appointment of the day, we sat down with the Chief of the Center of Fetal Diagnosis and Treatment, and he presented us with the worst news any parent could possibly hear. News that we were not expecting nor prepared for. Our daughter was diagnosed with a rare terminal disease called Osteogenesis Imperfecta (OI), type II. He told us that she was showing signs of stunted limb development, several rib fractures, and a very thin skull. At that moment, our world came crashing down on us. Our beautiful baby would undoubtedly pass away either in utero or shortly after birth.
Once the shock wore off and the numbness set in, they presented our options: terminate the pregnancy or carry to term. My husband and I didn’t even have to talk about it, we both knew the answer was to carry our precious baby to term. We were going to give our baby the greatest life we could for as long as we could.
Prior to our appointment, we had no interest in finding out the sex of our baby, but in the process of presenting the diagnosis and prognosis for our baby, the doctor let it slip. We were having a girl. We were getting our little girl.
MAKING MEMORIES
Approximately a month after finding out about our daughter’s diagnosis, the CVS results came back. The results showed that our daughter had a form of skeletal dysplasia, but it did not show conclusively that it was OI. However, there was no doubt by the medical staff that our daughter did have OI, type II. My husband and I had no family history of any skeletal diseases, and the CVS test also told us that this was a completely random occurrence. We would never know what caused the mutation of our daughter’s collagen genes.
The pregnancy continued as normal with routine checkups with my regular OB and the occasional visit to CHOP to monitor the growth of our daughter. During these visits with CHOP, we would meet with our palliative care team, which included a doctor, genetic counselor, social worker, psychologist, child life specialist, and chaplain. The support was amazing, and they did everything in their power to prepare us for the day we would deliver our daughter. We began a birth plan that consisted of our wants and needs in the time before, during, and after delivery.
It did not take long to name our daughter, because we had already picked out a girl’s name during our first pregnancy. We named her Isabelle Marie. We scheduled a family photo shoot, we had her name printed on a sign, and her ultrasound profile photo framed so that we could incorporate her into our family photos, knowing that these pictures could be the only photos of our family as a family of four. We wanted to memorialize the pregnancy and our love for our daughter and our son’s little sister.
We prayed a lot. We cried a lot. We read to her, talked to her, danced, and sang at two concerts with her. Every experience or adventure we went on, we made sure to incorporate her into it. We did everything we could to make sure that she knew she was so loved.
MEETING OUR DAUGHTER
Tara: I was scheduled for a repeat C-section on January 23, 2019; however, in the early morning hours of December 22, 2018, at 33 weeks and 2 days gestation, my water broke. Given that it was a month earlier than expected, we scrambled to put a hospital bag together and headed to the hospital. On the hour’s drive to the hospital, we made all the calls to family members and the photographer. I remember thinking, “I have not felt her move since waking up.” I began to worry that our prayers to meet our daughter alive would not be answered.
Matt: When my wife woke me, basically screaming my name, I was confused and disoriented. When I began to comprehend that she was saying her water broke, my heart sank. It was one of the worst moments of my life. We wanted more time.
Tara: We arrived at the hospital and went up to the Special Delivery Unit with our three-year-old son in tow. The nurse immediately took us to our room and began taking my vitals. The moment I heard Isabelle’s heart was a huge relief because I knew that she was still with us, even if that time was coming to an end. Our family began arriving, everyone in a little bit of shock that this day had come so soon.
We arrived at the hospital at eight in the morning, and we were scheduled for a C-section at noon. Those four hours in the hospital before surgery were so hard. I remember constantly looking at the clock and realizing that the time with our daughter was coming to an end so quickly. Shortly after noon, and before they wheeled me into surgery, our family gathered in our room, and we prayed.
Isabelle Marie was born at 12:54 pm, weighing 3 pounds and 1.9 ounces. Isabelle arrived in this world with her eyes wide open while sticking out her tongue to the doctors. She had a full head of dark hair, a cute button nose, tiny little lips, and saddlebag cheeks.
She was immediately wrapped up and handed to my husband as they continued my surgery. We spent the entire 48 minutes that we had with her telling her that we loved her. I have never said “I love you” so many times with such intention, and I hope she felt the unconditional love that we have for her. She did not cry, but she did coo, and I will never forget those sweet sounds. The medical team kept an eye on her, and when her heart rate was beginning to decline, the chaplain came in and baptized her. Just as the doctors finished my surgery, our daughter took her last breath. Our daughter was so strong. The doctors did not expect her to survive very long, but she gave us 48 precious minutes.
Matt: While I held Isabelle, she would take a periodic breath, her mouth would open and her whole body shuddered a bit with the effort because her little underdeveloped lungs were so weak. It was so cute and so heartbreaking at the same time, but she was alive, and we got to meet her and shower her with love. When the doctors took her from me to weigh her and check her vitals, she passed, and that was the worst moment of my life. It’s indescribable, the sadness, helplessness, and hopelessness I felt at that moment. I can’t imagine a hell worse than that feeling.
FAMILY LOVE
Our son was the first to meet his sister. We wanted to make sure that he had time with his sister and that memories of this meeting were captured by the photographer. After several more tears and lots of pictures, the rest of the family came in to meet Isabelle. We were lucky enough to have a great photographer that captured raw, precious moments of everyone holding her. The hours seemed to pass so quickly and eventually, our family began to leave, leaving us to spend some time with our daughter. She never left our side, and we held her every minute we could.
SAYING GOODBYE
In the time that we spent in the hospital, we made more memories with our three-year-old son and angel daughter. We had this beautiful time together, but it, unfortunately, had to come to an end. In the final hours, we tried to prepare ourselves for goodbye. There is nothing that can really prepare you for the unimaginable. We worked out the details of our daughters’ cremation, filled in the paperwork for release, the paperwork for her birth and death certificates, and tried to take in every last moment with her.
The moment we had to say our final goodbyes, say our final “I love you’s,” and release our daughter’s body to the hospital is undoubtedly one of the hardest things I have ever had to do. As my husband wheeled me out of the room and through the hospital with empty arms, my heart broke into pieces. It tore us both apart inside.
FINDING HEALING
Grieving the death of our daughter has had its ups and downs. I tell people, “every day is different,” because it is. This experience has changed me and my perspective on a lot of things in life, but the best outcome was that in our time with Isabelle, we have learned true unconditional love.
Carrying Isabelle to term after receiving a fatal diagnosis was and always will be our life’s greatest challenge and accomplishment. Knowing the outcome of the pregnancy did not and could not fully prepare us emotionally for her passing. Isabelle’s life was short but incredibly meaningful. We hope for nothing more than to make Isabelle proud of our lives here on Earth so that when we do meet in the next life, it’s a meeting of nothing but joy and love.