Its long, but I hope it encourages someone out there
The Beginning
When we first found out that we were pregnant with Emma in the fall of 2000, our first thought was “how”. Our son was only 5 months old at the time. I had just had surgery to remove precancerous cells from my cervix only 3 weeks prior. “How can we do this now” was the first question that popped into my mind. We had just moved to our current city the previous year and were in the beginning stages of planting a church, financially we were becoming stable for the first time in a long time. Little did my husband or I realize that the Lord had so much more planned for us in 2001.
In March of 2001, Mark was offered a promotion with his current employer. It would require us moving to Sarasota which appealed to us because my family was there, but the timing felt really odd. I had just had my 19 week sonogram and other than some bleeding and horrible morning sickness, the pregnancy was going beautifully. After much thought and prayer, Mark and I realized the Lord was leading us to take the promotion. Although we couldn’t understand His timing, there was later no doubt His hands were holding us in this decision.
Once we moved into our new home, and became settled, I began the search for an OBGYN. This was not as easy as I had assumed it would be. Because I was late in my pregnancy, and my first birth was complicated and due to my cervical complications, I was told I would need to be evaluated by a perinatoligist prior to being accepted by an OB. I scheduled my Peri visit for April 4th, 2001.
The Visit
On April 4th, the day began as any other day would. I arrived at the peri’s office and sat in the waiting room. I saw many pregnant women and thought to myself
“I wonder what is wrong with their baby” and silently was very thankful that my daughter was healthy and this was just a “formality visit”. Soon that thought would haunt me tremendously.
When the nurse called my name, I went back, laid down on the table and we began the normal “chit chat” about baby names and due dates. I was very excited about this visit because we had not seen Emma’s face as of yet, due to positioning during our other ultrasounds. This was supposed to be a sonogram of my cervix only, but I was determined to get a peek at her face this time. I remember asking to see Emmas face. As she scanned up, the temperature in the room suddenly felt very cold. I remember all conversation stopping and the nurse saying “The doctor will come in and review the sonogram in a moment” with a smile on her face as she tried not to alarm me. Needless to say, she failed miserably.
The Doctor came in only moments after the nurse had left. Quickly he sat down, and stared at the 4 chambers of my daughter’s heart. The room was completely silent; I could hear every breath he took. Finally, after what seemed to be an eternity, I said to him “You are being way to quiet, and you’ve been looking at her heart way too long, what is wrong with my baby?”. He proceeded to ask me if I had anyone that could meet me at his office. That is when I really knew something was wrong. I called my mother, since Mark was at work, over 40 minutes away. He proceeded to tell me that there was a problem with my daughter’s heart, but he wanted to wait until my family member arrived before going into any detail. My heart literally stopped beating. I have never known pain like that before. I never wanted to feel it again.
I sat in his office, alone, with a box of Kleenex and went completely numb as I cried uncontrollably.
My mother arrived, we all sat down, and he proceeded to tell us that Emmas heart was grossly enlarged. A normal heart is about 30% of an infant chest cavity. Emma’s was bordering 75%. That her left lung was non existent (which was not accurate, but due to the size of her heart, it was completely collapse and non visible by sonogram). She had a huge amount of fluid build up due to her heart failure. Our daughter was in the last stages of heart failure. She had Hypertrophic Cardiomyopathy. The pain that I had felt before, the pain that I said I had never experience before, it was nothing compared to the pain I was feeling at that moment. He proceeded to tell me that my daughter would die before her due date. My heart stopped again.
Questions started popping into my head. “What caused this?”…. “I had a bad flu this winter and didn’t go to the doctor”…”How do we treat it?” I completely blocked out the last part of his conversation with me. I was not going to entertain the thought of my daughter dying. It simply was not going to happen. My questions came flooding out of my mouth, one after another. I did not allow any pause for responses from the doctor. My mind was in overdrive. Finally, he stopped me. He told me that he needed to make a phone call to see if he could get me into a fetal cardiologist that day. He was able to get us in, we had 1 hour to make a 45 minute trip. Luckily the fetal cardiologist was in the same town that my husband worked in, so he could meet us there. All I wanted was my husband at that point; he could tell me this was all a bad dream. Needless to say, we left very quickly, but not before the doctor took my hand, and said “Mrs. *****, I am so very sorry”.
The Drive
I do not remember saying alot during the drive to the Childrens Hospital. I remember my mom telling me we could face whatever was given to us, as the tears streamed down my face. I then remember saying something that, to this day, hits me like a brick. “I can handle anything except a transplant, Lord please, just make her okay.” I starred out the window at the skyway bridge, feeling complete hopelessness and grief. Little did I know how much I would reflect on those words later in our Journey.
My husband met us at the Children’s Hospital, not many words were spoken. I remember walking in, lying down on the table. The Doctor came in, and proceeded to do an Echocardiogram. I remember him saying “This heart is very exciting”, and I remember wanting to beat the heck out of him. I remember going into his office, sitting down. He drew two pictures, one of a healthy heart, and one of Emmas heart. He wrote the words “Pompes Disease” at the top of the page, told us that our daughter had what was called a glycogen storage disease. I asked him how we treated it. He quickly replied with “You don’t”. He told us that our daughter had an incurable disease, and she would die within 2 weeks. We should call him when she stopped kicking.I felt the world fall out from under me. I held my stomach and prayed for her to stop kicking, to pass away peacefully and for this to all be over. Unfortunately the nightmare was just beginning.
The next few days are a blur. I spent allot of time crying, allot of time reading websites on still birth and looking at pictures of still born babies. I was trying to prepare myself for giving birth to a baby who had already died. I mainly remember the uncontrollable crying. The hours I spent counting her kicks. The aching in my heart and the emptiness I felt.
Continued in next post