A letter from Graham's mom:
Hello! Thank you for taking the time to read our story and to learn more about our little warrior!
At 18 weeks we found out we were having our second baby boy, but our excitement quickly changed to fear and anxiety after we learned that something was wrong with his little heart. We were referred to a high risk doctor who, after multiple ultrasounds and testing, told us that Graham had Hypoplastic Left Heart Syndrome. Not only that, he was also diagnosed with Dandy Walker Syndrome, a rare brain malformation. He was given a 40% chance of survival and doctors told us this was the time if we wanted to think about aborting this pregnancy.
Never for one second did Dan or I think about giving up on our little man. If he could fight, then we could too! We decided to keep going and leave the decision with God. I was scheduled to be induced at 39 weeks, but Graham had other plans. He was born at 36 weeks, 5 days weighing in at 6.1 pounds.
We knew that we had a tough road ahead of us, as he would need his 1st of 3 heart surgeries at just 5 days old. These surgeries, called the Norwood Hybrid Procedure was supposed to make it so the right side of his heart did all the work since his left side was not functioning and essentially useless. After his first surgery, which was successful, we learned that his pulmonary valve was much worse than expected and probably not sustain his life. With the rest of the surgeries no longer an option (they would've been detrimental more than helpful at this point), we were told he would need a heart transplant in order to survive.
Once he had recovered from his heart surgery and was stable enough to travel, he was life flighted to Seattle Childrens Hospital to be evaluated in order to be listed for a new heart. We arrived Monday, October 12th and spent the next 3 days with the transplant team. While he was being evaluated, they discovered fluid backing up into his lungs so they recommended an Atrial Septostomy. They would put a catheter up through his groin to his heart where they would blow up a balloon to release the pressure. We were told after his 1st surgery that this was needed, but we thought we would have a little more time. It was becoming worse by the time we reached Seattle so they went ahead and scheduled it for Wednesday, October 14th.
Although this was a pretty invasive procedure, neither Dan or I realized the severity of it. In hindsight, I'm glad I didn't because I probably would have never let him go that day. We took him down to check-in, gave him hugs and kisses and said we'd see him in a few hours. The procedure went a little longer than expected, but the surgeon said it went good and we could go visit him in post-op. When we got there, they were doing an EKG as they noticed he had an irregular heart beat and trying to find the cause. They said this sometimes happens as his body is adjusting to the new pressures, but just to be safe, they wanted to keep him in the ICU overnight. We got him settled in, and once he was stable and sleeping, we headed back to the hotel for the evening.
Later that night Dan received the call that night that no parent wants to get. We were told we needed to get back to the hospital immediately. Apparently Graham's lips started turning blue so the nurses were going to put a breathing tube in for him, but his heart stopped before they could get it in, and it took him about 5 minutes to bring him back. My poor little man was without oxygen for almost 5 minutes. At this point, they were worried that there could be damage to his brain and other vital organs since he was without oxygen for so long. My world crumbled to pieces when I heard them say there was nothing left they could do for my sweet little boy, who wasn't even 3 weeks old. We went and sat with him and told him we loved him and it was ok to go if he was ready. They let me hold him for a few hours that night, at they made a comment that this was the best he looked all night, in my arms. He vitals were stable. After a while though, I think he knew God was calling because he started to code again, and instead of having doctors do compressions again, we decided it was time. He was telling us. We held Graham in our arms and loved on him as his heart stopped beating and the angels took him home. We don't know the exact cause, as we chose not to do an autopsy. We didn't want to put him through anything else. Having known the reason his heart finally gave out won't bring our little boy back. We are at peace knowing he is with God and finally has his new heart.
Graham fought harder than anyone I know for 20 days and endured more than any child should have to go through. I had to wait 11 days to hold him for the first time, I never got skin to skin, or to breastfeed or even put cute baby clothes on him. He never got to see his room we decorated for him or meet his puppy dogs, or ever leave the hospital. Despite the odds, he fought and fought and never gave up, but God had other plans. We are so proud and incredibly honored to have gotten the chance to meet him and love on him for the short time we were given. He forever changed us and we are eternally grateful to him. He taught us not to be complacent, life is precious and we need to live life to the fullest because you never know when it will be our last. Fight, and never give up. Love, and then love deeper. Live for those who were denied this privilege.
It's not easy for these kiddos, as they lay in the hospital fighting for their lives. Imagine what it must feel like to be stuck in a hospital bed day after day and not be able to go outside and play with your friends, go to school, ride a bike, go to the park, or play with your siblings like most children. Not having your own bed to sleep in every night. Getting to experience being a kid is denied to most of them, so the very least we can do is make life a little more enjoyable for them. Even something small such as a new toy can bring a smile to these kids, and their parents, in the midst of an incredibly hard time in their lives. Some may never go home. Let's spread the love and show these kids that there is something worth fighting for and how proud we are of these little warriors among us.
Thank you for your support of YPB's toy drive!
Stephanie and Dan Munhall,
"If we believe that tomorrow will be better, we can bear a hardship today." -Thich Nhat Hanh