GRAND RAPIDS, Mich (WOOD) – Below we have a special story from Shelly Faber, a Health Coach at Priority Health. She shares her personal journey of losing a child. It’s an incredible story and she wants other women who have gone through similar situations to know that they are not alone:
“Five years ago, on February 5th 2015, the Lord blessed our family and made me a mom. With a healthy/smooth pregnancy and a quick and (fairly) easy delivery, Caitlin Mae Faber entered the world on a cold and partly sunny afternoon. She weighed 8lbs, 0oz and was 21 inches long. Her father (Mike) and I were smitten and so in love.
She was able to come home on Saturday, February 7th after a normal, two-night stay at the hospital. Adjusting to life with a newborn is always unknown – especially when it is your first one. We didn’t really know what to expect. She started out sleeping well and was eating great. She’d give us some smiles, some cute newborn squeaks and squeals, and she loved to cuddle up in our chest. Her cry was loud – she made herself known. All in all, things were going well, and we felt SO blessed.
Her first two trips to the PCP for a well-child went great. She had a clean bill of health and we went on our way back home. With nursing – I was very cautious of what I was eating and drinking to make sure she had only the best when it came to food. Being in the health and wellness field and having a huge passion for exercise and nutrition, this was the norm since day one of knowing I was pregnant.
When Caitlin was around 3 weeks old, she started to become more difficult. She would cry a lot more and it was getting harder to calm her. Her eating habits were going in the opposite direction and she would push me away. We called the PCP, talked to others, and really thought she was struggling with colic. On Thursday, February 26th, I was home with Caitlin for most of the day. Mike is a teacher and had parent/teacher conferences until later in the evening. This was the day she struggled the most by far. I had my mother in law come over in the morning to hold her while she cried so I could have a break to shower and sleep. My mother came over later in the evening to help as well, because the pattern was continuing. There was no break from the tears and she had only eaten about an ounce all day. We talked to the doctor and made an appointment for Friday morning. That night before, Mike and I would rotate who slept and who was the one who walked Caitlin around the house and attempted to feed her but it wasn’t getting any better. This is when we decided it was time to call the on-call doctor. He heard her crying in the background and sent us to the Helen DeVos Children’s Hospital Emergency Room to get her checked out. This began a long journey.
As testing started, Mike and I sat anxiously holding Caitlin, waiting, praying and hoping for clear and easy answers. When all the tests in the ER came back fine, they told us if we could get her to calm down for 15 minutes, we’d be able to go home. After a couple long hours of trying, that didn’t happen, and we were admitted. There was more tests being run, more blood work, more failed attempts at calming her down, and no answers. As we were going down for an ultrasound on her abdomen, she started to calm down and stop crying. Mike and I were ecstatic and ready to go home! When the doctor came back and asked how long she’d been in that state for, we told her about 20 minutes. She looked very concerned and before we knew it, we were admitted to the Pediatric Intensive Care Unit.
In the Pediatric Intensive Care it was determined that she was having constant seizures. The next step was to determine what was causing them and how to stop them. Once again, we had a moment of hope. We had an answer. We both thought, seizures can be stopped by medication, right? However, not these types of seizures. Caitlin’s brain was getting more and more damaged from the seizures to the point where they ended up putting her into a medical induced coma to let her brain rest and attempt to stop the seizures. This worked, but as they slowly weaned her off the medication, they told us to look for signs of life and movement – toes wiggling, eyes opening, anything. Nothing was happening. We were soon pulled into a conference room and our worst nightmare came true. Caitlin was not going to make it. Her brain was so damaged that there were not very many signs of life. The only thing keeping her stable was life support. We begged, pleaded, and prayed hard for a miracle. We prayed for our baby girl to wake up and prove all the doctors wrong. But that wasn’t her story. She was almost completely brain dead. We were devastated, not sure how to function or move on. We had our pastor, close friends and family come for a baptism at the hospital. We had our chance to snuggle with her, hold her, and tell her how much she is loved. On March 9, 2015 around 7am, she went peacefully to heaven.
We didn’t have any answers to why this happened. It could be a fluke thing? Most of the common genetic things were coming back normal. What are our chances of this happening again? What did I do while I was pregnant or while she was here to make this happen? When there are no answers, it’s easy to look back at everything that I did and blame myself. We consented to be part of a research study through the Children’s Hospital of Philadelphia where they would look at every possible genetic thing that could happen. Doctor’s and experts alike were dumbfounded. They told us that absolute worst-case scenario, it would be a 25% chance that it could be genetic and happen again but it would have to be a rare disease since all the common ones were tested for. It could be 1 in a million chances or just total fluke. After almost a year of calling the research study to check in, a year of praying hard for next steps, we were blessed with a healthy baby boy, Dylan. He had an EEG done right away and he was healthy. We were so, so thankful and felt that it was a fluke disease. A year later, we went on to have our third child, Elena Mae.
Shortly after Elena was born, we got a call from our doctor around 11pm on a weeknight that Caitlin’s test did have an answer. They know what Caitlin passed away from and it is genetic. It is called Isolated Sulfite Oxidase Deficiency and there is a 25% chance that Elena has it. If she does, we will know within the first three weeks of her life but it is fatal and there is no cure. Luckily Dylan does not have it, because he was two at the time. We had to rush Elena down to the hospital to start getting tested. Once the testing was done, we had to wait two weeks for an answer. Two long weeks of reliving those same days in the hospital, questioning, crying, praying and struggling. On a Friday at 5pm, we got the call that Elena was a carrier of this disease but did not have it. She is currently a healthy and beautiful (almost) two-year-old and we thank God everyday for this gift. If we would have found out what disease Caitlin had earlier, we wouldn’t have had any more children. The risk is too high when it is life and death. We found out just when God knew it was the right time and are now blessed with 1 heavenly baby and two healthy, earthly children.
Even though we have an answer, I still question, blame, and am hard on myself for what happen. I know it’s genetic, but the pain of loss is there. I know it wasn’t me or anything I did but I can get caught in that crazy cycle. I know God has a plan for our story and I have seen pieces of that come together. We had people from all over the world praying for us and with us in both circumstances. I met some amazing people through this journey. People stepped up as we navigated children’s special health care, bills, insurance, and figuring out our new normal. We had the best nurses. Some of whom I still see today! One nurse, in particular, was our day nurse Dana. She was with us majority of the days in the hospital with Caitlin. She changed her shift and worked extra days to be with us through this journey. She was my in-room counselor as well as Caitlin’s bedside nurse. She loved Caitlin deeply and our family formed a quick and easy bond with her. Caitlin fought through her last weekend hard and passed away as soon as Dana’s shift started on Monday morning. The day of Caitlin’s visitation, we found out that Dana had been in a serious car accident. The next day, we had Caitlin’s funeral and were exhausted, beat, devastated, and just plain numb. Sitting on our couch that night, Mike told me that he really felt we should go visit Dana in the hospital because of all she did for us. I’ll be the first to admit, I didn’t want to, but how do I say no? Mike was really feeling God say go. When we arrived, her dad walked up to us (who we have never met before) and said, ‘you must be Caitlin’s parents’. We were shocked. He told us how much Dana loved Caitlin and then told us Dana was under a coma (the same medication Caitlin was on). He invited us to stay, meet his other daughters, and be with them during this difficult time. A few days later, on March 15th, we learned that Dana had passed away. Dana’s father reached out to us and told us he was positive that Dana was here to be Caitlin’s guardian angel during her time at the hospital and now they are together again. It’s a beautiful thing to picture her with our family, friends and loved ones who are already in Heaven.
Five years later I miss Caitlin and there isn’t a day where I don’t think about her. I imagine what she would look like and what she’d be doing. Some days I cry and some days I smile remembering her beautiful face. I’ve learned that grief is a journey and there is no end. I am so blessed to be her, Dylan and Elena’s mom and I hope she is looking down and so proud of us all. I want to take any and every opportunity I can to tell the world about her in hopes that our story will encourage or help someone else. It’s a messy and hard journey and I never know what to expect next. What I do know is that I love my kids with all my heart and I am so thankful to be their mom. ”
Sponsored by Priority Health