Dear Mr. Sparks,
My name is Rebecca, I live in Panana City, Florida with my amazing husband and our beautiful 7 year old daughter. We live what some people call the American Dream. We live in a comfortable house with our 2 dogs and a cat. We have a large back yard and 2 cars in the driveway. I home-school our daughter while my husband works hard to provide for us. We have a great love for the Lord and have a church family that we love. It’s nothing to complain about and I promise you, I do my best not to. Life wasn’t always this “picture perfect” though.
When I met my husband, Steve, back in 2004, we were then living in Salt Lake City, Utah. I was engulfed in a lifestyle of partying. Sex, drinking, partying, and I was looking out only for myself. I had left my first child to live with my parents and continued down a path that was guaranteed to push me further away from my family and anyone else who cared about me. I had been through one divorce and tried to lead a “normal” life but I was convinced it just wasn’t for me.
In 2005 I moved into a house that was full of like-minded party goers and not long after I developed a deep friendship with one of the men in the house. The partying got old and all but the one roommate who wasn’t much into the partying lifestyle, moved out of the house. Our relationship grew and we transitioned into a relationship pretty easily. I still never looked past tomorrow but knew I was content with the way things were. We continued to go to the bar occasionally but life slowed down a lot. Late in the year I was dealing with some sinus problems and knew if I didn’t get antibiotics for the infection it was only going to get worse. So we went in to a clinic and when she asked if I was pregnant, I quickly answered “no”, but when she left the room I told Steve that I actually wasn’t sure and that maybe we should pick up a pregnancy test when we went for my prescription. When the pregnancy test was positive I wasn’t prepared for what would come in the months ahead. I hadn’t even been sure I wanted more children, Steve had never expressed a desire to have kids and I already had one that I wasn’t taking care of.
By the time the first Ultrasound appointment came in February, we were both excited about the baby. We had stopped going to the bar and the slow pace allowed us to refocus and think about what we wanted and we knew we wanted to have this baby and stay together. When they told us we were having a boy, I was thrilled. Maybe I felt like it was a new chance, since I had become pregnant with my first boy when I was only 17 and had left him to be raised by his grandparents, I foolishly thought I could restart life. I hadn’t forgotten about my firstborn, but the situation was hopeless. I hadn’t been able to sustain a relationship with my parents because of the lifestyle I had been leading, let alone think of how to ever have a relationship with my son. This new baby felt like another chance at “normal”.
The pregnancy was going great and I felt wonderful. I loved being pregnant, never had morning sickness and didn’t mind that my waist was growing rapidly. My first Ultrasound had been at 16 weeks and we scheduled a fetal echo for my 20 week ultrasound because my brother had been born with a heart defect that took his life when he was a baby. I saw the Ultrasound as a formality, since my brother’s defect wasn’t genetic, it seemed silly to even need it, but I was happy to have an extra ultrasound anyway. As the Ultrasound tech began taking measurements and doing all the easy stuff, I remember thinking she looked confused and she was so young, I considered she might be new or something. Then she excused herself saying she’d be back in with the doctor in a few minutes. When the doctor returned, she showed him what she was seeing on the Ultrasound and then he pulled up a chair next to the exam table and began to explain what he saw. He talked so calmly and with such assurance that, at first, I wasn’t concerned. I think it was the point where he explained that babies born with this defect, Congenital Diaphragmatic Hernia, have a 50% survival rate.
That was the moment that really changed our lives. Scared and confused I spent the last months of pregnancy on the CHERUBS website, chatting with other mom’s, researching the defect and preparing myself as much as I possibly could for what we should expect. One thing I learned was that we couldn’t have any expectations.
I was able to reconnect with my mom, who became my biggest supporter. She was compassionate and patient with me because of what she had gone through with my brother. She went to every appointment she could and we began to spend a lot of time together, which meant I was also able to spend a lot of time with my son. She even got Steve a job at the nursing home she worked for a picked him up for work each day. The circumstances had caused me and Steve both to mature and we were slowly leaving behind the partying and frivolous lifestyle we had led not long before.
On July 19th, 2006 just before 8:00am my doctor came into the hospital to see how my induction was progressing and left saying it would definitely be a while and that he was going in to work and would be waiting for the page to come back to the hospital for the delivery. He had barely made it to his office when the nurse was already calling him because it was time. I remember him walking in just in time and I was crying. I was so scared because I knew my baby was perfectly safe as long as he stayed right where he was. The fear of what was to come almost paralyzed me but my doctor was reassuring and kind and just before 9:00am Collin was born and let out a tiny squeak before they whisked him through the window, into the NICU.
Once Collin was stabilized, EMS was called in to transfer him to the Children’s hospital right next to the hospital we were at. We had already toured the NICU, met the surgeon and familiarized ourselves with where Collin would spend the rest of his journey. I felt like helpless; there was nothing more I could do, except wait.
That afternoon Collin was put on ECMO, a heart/lung bypass machine that would help to stabilize his oxygen saturation levels. Chest x-rays showed he had minimal development in his left lung and not much more in his right lung leaving him with little blood vessels in his lungs to support the blood system. I knew enough about ECMO to know this was a sign of a much harder road ahead of us than we had hoped for.
The first few days not much changed and we attended rounds each morning hoping to hear from the Doctor that Collin had progressed enough to be taken off ECMO so he could have surgery. Initially we were told that the surgeon for the job was not optimistic about surgery due to the risk associated with the ECMO but I knew, and the doctor overseeing Collin’s care agreed, that Collin would not progress at all unless they repaired the hernia. His intestines would not move on their own and they were crowding the lungs too much for them to grow. If I can be blunt, I was told that the surgeon didn’t want to do the surgery because he would die, but I knew without the surgery he would die anyway, so why not at least try. Finally, surgery was scheduled, but it was rescheduled 2 times before he was finally prepped and ready on August 2nd. My parents and grandparents came to the hospital to sit with us while we waited out the long surgery. We were very hopeful, never even considering he wouldn’t come through the surgery and we were right but when the surgery was over, the surgeon was cold and detached as she explained his condition and outlook.
CDH has the name that because of the hole (herniation) in the diaphragm. In Collin’s case, his body had never developed the much needed diaphragm as a fetus. He was only 2 weeks old and had undergone a major surgery. The liver had grown to 2 times the size of a normal infant liver and when they pushed all of his organs into place, there was more intestine than abdomen, meaning they had to leave his incision open with surgical tape over it and hope that his swelling would reduce enough to stretch the skin and sew it up. When we got in there to see him, his body was so swollen, he was almost unrecognizable. Before his surgery, we had seen him with his eyes open and alert, sucking on his ventilator tube and following us with his eyes. Still, we clung to what little hope we had.
We had been at home in bed for only a few hours when we were woken up by a phone call from the hospital telling us we needed to come in. By the time we got there, an emergency procedure had been done to drain the blood from his left lung. That began a series of issues over the next couple of days and we began to consider Collin’s journey was coming to an end. We were offered one of the bereavement rooms in the NICU to stay in due to his weakened condition, going home was just not an option. On our first night there, we were still hopeful that the chest x-ray the next morning would show some air in his lungs. The next morning there seemed to be the tiniest bit of air so we told the doctor we wanted to give it another day to see if there was any improvement. This went on for 3 mornings and on the last day when the doctor and social worker came in to talk with us about our options. I told them I understood what they were telling us but that we just didn’t want to give up on him because we were impatient. There was such pressure on us (not from the hospital staff but just in general) to do something, make a decision, figure it out, but there was really nothing to figure out. We were stuck and we absolutely didn’t want to have to make the huge decision to take him off life support. What if we were wrong?
The night before and that day we had began to offer close friends and family to come and see him. We had a slow flow of visitors throughout the day and realized around 4:00pm that we hadn’t really taken the time to sit and eat. My mom was at the hospital for a visit and offered to pay for a pizza so we could eat something other than cafeteria food. Just as we were looking through the phonebook for the nearest pizza delivery (in my head thinking, do we ask them to deliver to reception or to the NICU??) there was a knock on the door.
The social worker and doctor on call (not my favorite doctor) came into the room and began explaining that they had exhausted every means necessary to help Collin’s condition. One of the extraordinary measures they had taken was to increase the ventilator flow higher than usual, hoping it would force the lungs to expand. His lungs were in such a poor state that instead of expanding, the air was forced backwards through his heart and into the ECMO machine causing the machine to fail. Nothing more could be done. He was too weak to survive anything more. It took me a few minutes and a couple of questions to realize that even though the machine had an air bubble in it and we were out of options that it was still, for the moment, doing its job and we would have time to hold him and say our goodbyes. This was like a small gift to me. I had seen many pictures of mom’s holding their lifeless babies, having not had the chance to hold them until after they had already passed. I had silently hoped, in those times that I was fearful he wouldn’t survive this, that I would at least be able to hold him before he died.
It took a few minutes to get him unhooked from the IVs and sensors attached to him but then they carefully moved his unconscious body onto a pillow on my lap. Steve positioned next to me, we began touching his skin and looking at his little feet and hands. Steve took a turn holding him and the social worker took some pictures of us using a disposable camera the EMS workers had given us and our digital camera we carried around with us every time we were there. I had always been a fanatic about taking pictures and now I’m so thankful I annoyed people with my endless picture taking.
As time went on, I became uncertain about where Collin’s pain level was. We had come to rely on the monitor to tell us how he was feeling. Heightened blood pressure and heart rate is a sign of pain, but they had taken off all the sensors and now I had nothing to go on. Even though the doctor had assured me he had been drugged enough that he was not feeling anything, I couldn’t help but wonder how they could be so certain. The nurse must have seen the concern on my face and she leaned in to me and quietly told me that sometimes they need to be told that it’s ok to go. “Go where?” was my first thought. I didn’t even know if I believed in the “where” she was speaking of but I felt like I was willing to try anything at that point and so I said it. It felt cheesy and unrealistic but I leaned down to Collin and said “Its ok baby, mommy and daddy will be just fine, you can go now”. In the next few minutes, I felt a sense of peace come over me that was almost startling. I didn’t have time to think about it long because as Steve held the stethoscope pressed on Collin’s chest, he slowly removed the pieces from his ears, shook his head and started to cry. It was over. The sense of peace I had was still there and strengthening. I had no idea how to explain it except that there had been an angel in the room with its large wings wrapped around us from behind. The explanation made no sense but it was the only way I could describe the supernatural peace I was feeling. Once we had handed Collin’s body over and began to clean him up, I was almost giddy. I kept smiling and telling Steve it was going to be ok. I was so resolved in that fact, it was going to be ok and I knew it.
Over the next few days we took care of all the details to have Collin cremated and his ashes buried in the plot with my brother in the town I grew up in, in Colorado. The cemetery, at the top of the hill overlooked the small town with the beautiful mountainous backdrop. I couldn’t think of a more beautiful place to have his memorial service which was lead by a man whose daughters I had been friends with many years ago and remembered having sleep-overs in their welcoming home as a kid. After the graveside service we had a small gathering in the park where we shared pictures of Collin and enjoyed the company of friends and family who came to show their support.
We spent the next couple of weeks staying with my cousin in Colorado until it was time to go back to reality. One of the hardest things about grieving is facing the outside world, realizing that the lives of everyone around you have continued without you. We knew we’d face shut off notices and an empty refrigerator when we got home. There had been a little bit of money in the cards people had given to us but not enough to live on and it definitely wasn’t going to last long so we knew we needed to ask for help. A friend suggested that we reach out to the Pastor of a church her mother attended and see if the church could help us. I was willing to meet with him, we had to do something.
When I met Pastor John that day when I walked into Calvary Chapel, his short prayer with me seemed to almost confirm the source of the comfort I had been feeling. The church offered some assistance and filled bags with food for me to take home but asked nothing in return. I had expected to have to work off the financial assistance or something, but he showed no concern for being paid back in any way. Later that week when the flower delivery service showed up at my door with a very nice plant arrangement from the Calvary Chapel staff, I felt loved and cared for in a way I had never known. They had already done so much for us and this was such a kind gesture. I immediately called my mom and asked her to attend church with me.
Within a year, Steve and I had both given our hearts to Jesus and were married during my 9th month of pregnancy with a healthy, beautiful girl. We named her Allie Joy and she’s always lived up to her name. We can’t imagine our lives any different and as much as we miss what could have been with Collin, we trust that God makes all things work out for the good of those who love Him. Grieving comes with no rules attached and no one really grieves the same way but I surely cannot imagine having to live this life without having God to guide me through it. The old life is gone and God has made me new and I have Collin to thank for guiding me to the truth.
this is Steve, Jordan (my oldest), Allie (my youngest) and I in December, 2014
Collin, prior to surgery.
This drawing was done by a friend, Stacy Craig after I told her Collin's stor