Angel Watch is such a wonderful program. Heather Walker, in Utah county, and her angel helpers, is there to help mothers and families--no matter the time of day. I remember coming to my bedside at 2:00 in the morning. She well understands the heartache. I wrote about her in my blogpost "Our Grown Up Angel Heather."
Even through their own grief, it has been difficult for Cheryl and Jon to witness the grief of their older children. This family has so much love for each other and for little Quinn, who I am sure will be running right along with them throughout their lives.
Thank you, Cheryl and Jon, for sharing your tender story:
In October of 2017 we found out we were expecting another baby. We couldn’t have been more excited! 2017 had been an extremely rough year for our family. My mom had gotten in a car accident in March and remained in the hospital until she passed away that August. We were ready for a new year and a new baby in 2018. On January 3rdwe had a routine doctor appointment at 19 weeks. We knew we would be having an ultrasound and couldn’t wait to see our baby again! We were excited when we found out it was another boy, but we also found out that they had some concerns. My babies have always had a history of not cooperating during ultrasounds, so the fact that he was squished up against my cervix and not giving us a good view didn’t come as a surprise. The technician wasn’t able to tell if there might be something wrong with his legs or if it was just the positioning and angle. It was decided it would be best to set up an appointment with maternal fetal medicine to have a more in-depth ultrasound done. Of course we were hoping they could get us in that very day or the next day at the latest…no such luck. We were scheduled 2 weeks out. As you can imagine over the next two weeks, my husband Jon and I went over every possible scenario that we could think of, and there wasn’t any scenario that we could think of that we weren’t able and willing to handle.
We went into this appointment expecting to hear there might be some issues with our sweet baby, what we didn’t expect to hear was the word “lethal”. We were told that our little guy has a form of lethal skeletal dysplasia, called osteogenesis imperfecta. We were told there are several types of OI and unfortunately the type our little guy had was type two which is the most severe. The doctor told us that he will have less than a 1% chance survival rate at birth that almost all infants die at birth or shortly after due to respiratory problems, if not prior to birth. Clearly we hadn’t heard what she said correctly. There was no way we were being told that our baby wasn’t going to live. She went on to explain that unfortunately there was nothing that can be done to fix it.
We were given two choices…the first choice being to deliver him right within the next day or two, the second was to carry him full term. Neither one was an easy choice, and sadly neither one would have a good outcome. The doctor left the room for a few minutes to give Jon and I a chance to process what we had just been told and to discuss what we wanted to do. We felt strongly about going full term, but struggled with knowing if this is the right thing to do. We wanted the least amount of suffering for our baby, but we also wanted to hold on to any bit of hope and possibility of a positive outcome. We decided that we would carry our son to full term.
Our doctor referred us to a specialist at the University of Utah, however we weren’t able to see him until the 15th February, which seemed forever away. We were hopeful for good news, but also preparing for confirmation of what we have already been told. I wanted so badly to be mad…to be so angry when I would walk through the store past the baby things, knowing I should be shopping and preparing for our little guy. But for some reason I couldn’t be angry, and for that I was grateful. It was so strange to feel gratitude in that situation, but my heart was so full of gratitude. I was thankful for the time that I was getting to have with my sweet baby, even though I knew it may be short. I was so thankful for every moment I was getting to carry him inside of me. I was thankful for my amazing husband, who had endured so much over the past year as I struggled with my mom’s car accident and then losing her. And now this….even as he struggled himself during this difficult time, he was there for me every step of the way, being my rock on my good days and bad. I was thankful for our amazing family and friends who always seemed to know when I needed them the most. I was thankful for our sweet kids, who seemed to know just the right things to say, or when I needed a hug. They were a great reminder of everything I had been blessed with. I was thankful for complete strangers who had offered such kind words, prayers and even though they didn’t know me, they would reach out to check on me on a regular basis. Sometimes it’s difficult to see that even through such sad and rough times that we still have so much to be thankful for, but I was so blessed that even during such a sad and difficult time that I did indeed have so much to be thankful for.
Our appointment with the specialist was confirmation of the devastating news we had already been told, and again we were told it would be in our best interest to terminate our pregnancy. We still felt strongly about carrying out our pregnancy. We had gone into this appointment prepared but hearing again that our baby indeed had a fatal condition was so hard to accept. With everything that had happened over the past year, I had tried to convince myself that there is good that comes from everything, regardless of how hard you may have to look to find that good. My mom’s accident was so very tragic, and the months that followed were so very difficult, but through that tragedy I was able to meet and develop some very special friendships that would help me through that difficult time. I will forever treasure those friendships and the peace and comfort they brought me during such a difficult time in my life. When we found out shortly after my mom’s death that were would be having another baby, we were sohappy, we felt like this baby would have such a huge part of my mom with it, we were ecstatic!! To then be faced with the news that we would be losing our precious little baby, seemed almost too much to bear. How do you possibly find the good in a situation such as that? There is no way there could possibly be any good to find in such sadness. One thing we had been told at each and every appointment we had is what a good strong heart our little guy had. I told Jon after one appointment that was great to hear, but didn’t really do much good if the rest of his body wasn’t going to be strong enough for him to survive. And one day it hit me…if we weren’t going to be able to have our little baby in our lives, maybe he would be able to help another family to have their baby in their lives. Maybe there could be some good in all of this. I talked with Jon about my idea of possibly donating our baby’s heart to help save another little baby. Jon was in agreement and said almost word for word what I had been feeling. At our next appointment we addressed the desire to be able to donate our son’s heart to help save another. We weren’t given a definite answer as it is a very tricky process, and definitely some uncertainty due to our son having a fatal condition, but were left with a bit of hope that it could be possible. We wanted nothing more than to be able to bring our baby home with us, but after having been faced with and experiencing the heartbreaking news of being told your baby isn’t going to survive, we truly knew what that felt like, and if there is any way we could help another family from going down that same road, we wanted nothing more than to be able to do just that. We received a call the following week that we would not be able to do any type of organ donations. Again we were devastated, but were determined to remain positive and focus on the short amount of time we had left with our baby.
At 25 weeks two very amazing women from Angel Watch came to our home and met with my Jon and I . I was so very hesitant when they first contacted us…I felt like meeting with them was yet another confirmation that our baby is going to die. I felt a sense of guilt…as though meeting with them was a sign that I was giving up hope. Several times I had considered canceling, but am so thankful that I didn’t.They were another blessing brought into our lives during that time to listen to us, give us guidance and support us through the tough road that was to lie ahead. I no longer doubted if we made the right choice to continue on. I couldn’t wait for the day we would get to hold our baby boy and let him how much we loved him, regardless of how short that time might be, but until then I was so thankful for every second of every day that I got to carry our son inside me.
At our 30 week appointment our doctor told us I was measuring at 35 weeks. He wasn’t very worried about it…but I was. He said he expected me to deliver within the next few weeks. I wasn’t ready to face the reality of the unknown…not ready for the very real possibility of losing our son…not ready for him to leave the safety of my belly where I could talk to him and sing to him every day, where I could feel him and hold him close every second of every day. Monitoring the baby was then done on a weekly basis now as it was our doctor’s main goal is to make sure we are able to spend time with our son. As the end appeared to be closer than we were anticipating the reality, fear and sadness started to set in even more. Our doctor was convinced that we would just keep our little guy comfortable for the short amount of time he would be with us, however we were still holding on to every bit of hope and praying for the best possible outcome, as well as the strength to carry on whatever the outcome may be. I started contacting funeral homes to discuss arrangements for our son if and when the time was to come.
On the evening of Sunday April 22nd Jon and I were sitting in the front yard with our kids when my water broke. I ran upstairs to our bathroom and noticed that I had also started bleeding. I tried waiting for the water and bleeding to stop so we could go to the hospital. When I realized the bleeding wasn’t going to stop Jon helped me to the car and we hurried to the hospital. I have never been so scared in my entire life. Shortly after I received my epidural our baby’s heart rate dropped and they we rushed to the OR for an emergency c-section. Due to the extreme amount of amniotic fluid it caused an abruption during theprocess and his umbilical cord became completely disconnected causing his heart rate to plummet and breathing to stop. At 10:46pm our baby Charles Quinn Knabenschuh, was delivered weighing exactly 3lbs and was immediately rushed next door to the NICU where they started performing life saving measures through a suction mask to get him breathing again which unfortunately was unsuccessful. The next steps would have been chest compressions that could have been very traumatic for him and at that time Jon had to make the decision to stop those efforts so he would not suffer any longer. One of the most difficult decisions he would ever have to make in his life.
Before delivery and during the c-section procedure I had an estimated blood loss of about 2 liters so I was taken immediately be given several blood transfusions. I vaguely remember the events leading up to that. I remember being told that my baby was out and wasn’t doing well, that they were in the NICU with him and Jon and that they were doing everything possible for him but it wasn’t looking good. When I woke up later, I was surrounded by my family and a few close friends. I knew right away that he hadn’t made it. As late as it was, Heather from Angel Watch was there, taking pictures and making hand and feet molds. We were able to spend that night and the following day with Quinn.
Holding him and loving him, singing and talking to him, trying to memorize every inch of his precious little body. He looked so sweet and so peaceful. His brothers and sister held him and told him how much they loved him, It broke my heart to see each of them hurting. Finally the time we were able to spend with him was over…when they took him from me, a huge piece of my heart went with him. I spent the next few days in the hospital recovering. I should have had my cute little Quinn with me during those days, but my arms were empty. Between visitors and my family being at the hospital, as I would sit alone in the sometimes not so friendly quietness, I pondered what one word I would pick to describe what I had been feeling. Believe me, there were a whole slew of them to pick from… scared, sad, heartbroken, denial, lost, devastated, angry, crushed….but the one word that I couldn’t shake from my head even though it againsounded like the most inappropriate for the circumstances, was blessed.
Our journey since January when we were given such heartbreaking news started out with so much doubt and uncertainty as to what the future would hold and if we were making the right decisions. Ihave to say that I am extremely blessed to have a wonderful husband by my side who has shared the same decisions with me. We both knew that we wanted to carry our precious son with us till the end so that we were able to spend that time with him and would never look back with regret or what-ifs. April22nd was scary when my water broke…we didn’t know what the outcome would be, and all I could think about was that I wasn’t ready to not have my lil guy so safe and close inside of me anymore. Add in the fact that it was two months early and that minutes after my water broke I started bleeding heavily and that didn’t stop until after the c section, it made for a super scary situation. Our story didn’t have the ending that we prayed and hoped so long and so hard for, but Jon and I both feel as if things happened the best possible. Our precious angel didn’t have to suffer, our family was able to spend time with him seeing him so beautiful and so peaceful. We were chosen and blessed to be the parents of such a sweet perfect angel. Quinn has taught me more about strength, love and courage in a few short months than I have learned in my lifetime. My love for him and my family is completely indescribable…and I consider myself to be tremendously blessed.