Dylan’s mom, Talitha, shares her son Dylan’s brave journey with a critical congenital heart defect…
“When I found out I was pregnant, I was absolutely thrilled. I had always wanted more children in addition to my 5 year old boy, Jordan. The pregnancy was great without any major complications and I went 6 days past my due date! On Thursday, May 26, 2011, my dad’s 50th birthday, Dylan Dainger Snyder was born. Labor went fairly quickly and I only pushed for 8 minutes before he made his grand appearance. It was the quickest and best delivery I could’ve imagined. He was 8lbs. even and 20 3/4 inches long. His dad, Jason (Jay), joked that I pushed a pound per minute! I felt great afterward, was up walking around and didn’t even feel much pain. After Dylan was born, both Michele (J’s mom) and I had commented to the nurse at separate times that his hands and feet were a weird shade of blue. She assured us that it was normal for newborns.
Throughout the rest of our stay at the hospital, I had noticed odd things such as his rapid breathing without pausing and not nursing as well as my first son did. The nurse again reassured me that his latch looked good and newborns normally breathe quickly. The last thing that concerned us was his inability to urinate. They took him down to get an ultrasound of his kidneys to see if they were normal, and they were. At some point during our stay the pediatrician at Sacred Heart Hospital in Eau Claire, heard a heart murmur and asked if there was any family history of congenital heart disease. As far I knew, there was no family history. She then reassured me that it’s normal for newborns to have a murmur at birth and it usually closes up after a couple of days. She ordered an EKG to confirm it was a murmur. She then told us we would have to follow-up in Marshfield, WI since there were no pediatric cardiologists in Eau Claire. We were told that until Dylan peed on his own, they wouldn’t discharge him. Late Saturday evening a tiny bit of orange-ish looking pee was in Dylan’s diaper. So they sent us home and told us to make sure we keep our appointment in Marshfield, which wasn’t until the following Tuesday. Also, that if he starts turning blue, drive him to Marshfield. I told the doctor Marshfield is any hour and a half away from our house and if he is turning blue, wouldn’t I want to take him to ER? She said that if we took him to our local ER, they wouldn’t be able to help him and it would delay care longer than if we just drove him there ourselves.
Sunday night, May 29th, I had noticed Dylan was no longer eating at all and was extremely fussy. He also still hadn’t peed since we were at home. I took him to Sacred Heart ER, despite the doctors orders to drive him to Marshfield, early on Monday May 30th, 2011. When we got there, Dylan was 95 degrees and had an O2 saturation of 50. Immediately there were multiple medical staff surrounding him. Within hours, a helicopter team arrived to fly him to Amplatz Children’s Hospital in Minneapolis, MN. The same pediatrician was also on call that morning that had worked the weekend and told me I did the right thing bringing him in when I did, even though I tried to convince myself I should’ve brought him in sooner. The helicopter nurse with over 30 years experience working with cardiac kids, told me when the O2 saturation for the hands and feet were so different, that usually means there is something wrong with their heart and they were giving him a shot a prostaglandin because that is what was keeping him alive. Later, I was told by the doctors at Amplatz that he may not have made it if I would’ve waited a couple of hours before bringing him in. So I’m happy I followed my instincts.
Jason and I drove to Minneapolis, which felt like the longest drive of my life even though it was only and hour and a half away. I didn’t know when we arrived if Dylan was going to be alive or not. When we finally arrived, we were told Dylan was very “sick” and had suffered multiple organ and respiratory failure due to complications of congenital heart disease. It was by far the worst feeling in my life. It felt like the room was closing in on me. I started sobbing and asked J if I was dreaming. The doctor explained that Dylan has critical aortic stenosis, hypoplastic left heart syndrome and a slightly small mitral valve.
There’s a whole different world out there that I had never even considered until I was thrown in it. It is the world were so many children are in the middle of fighting for their lives right at this very second, proving their strength and will to live. Everyday is a gift. They are all such an inspiration!
“Dylan recovering in PICU after his Nissen – 5/11/12″
When I was pregnant, this was not anything close to how I imagined our lives to be. Jay and I took the initial news very hard. Luckily, we have each other for support which has made all of this much easier. It’s hard not to think about the worst but we are trying to remain optimistic and strong, for Dylan and each other.
The cardiac team at Boston has to take a staged approach with Dylan because his heart was not in good condition for the biventricular repair to work. What is common with kids with HLHS, is a thick fibrosis tissue forms around the left ventricle, making it impossible to grow. The surgery plan was to remove the tissue, add a shunt going to the lung, partially close the hole in his atrium, and look at the mitral and aortic valves to see what condition they are in. Then, in approx. 6 months to 12 months, come back to Boston to completely do the biventricular repair.
Sometimes, after all of the tissue is removed, the left side grows so rapidly, they are able to do the bivent repair within a few weeks, but that is very rare. In Dylan’s case, the whole left side was completely encased with this tissue as was the mitral valve (which looked pretty good!). Dr. del Nido said Dylan’s aortic valve was pretty damaged and at some point in his life, he most likely will need that replaced via open-heart surgery. Although, they are able to use it right now. The GREAT news is that Dylan’s left ventricle is almost the size of his right and that they were able to completely close the hole in his atrium and del Nido thinks Dylan has a great chance for the two-ventricle pathway to work! Only the minority of kiddos born with HLHS even qualify for the bivent repair, so we feel so blessed right now even though we have to take a longer route to get there. Also, Dylan still has quite a bit of collateral flow to lungs still, so they decided not to put in the shunt for fear of flooding the lungs. He suspects that as long a Dylan has a Glenn, he will continue to develop these collateral vessels. He said there is no point in doing anything with them now because they would have to redo them right before surgery anyway. So right now they are going to use them to their advantage until they are able to take down the Glenn. Dr. del Nido also thought that if Dylan benefits even a little bit from being on oxygen to prevent as many collaterals as possible from growing, it would be worth it. So it looks like he will be on oxygen until he can have his full biventricular repair.
As of right now, we know for sure Dylan will need at least two more open-heart surgeries in his life. One for the bivent repair, and one to replace the aortic valve when his starts to fail. They will monitor him closely throughout the next few months to see how quickly the left side is growing with echos and CT scans (which can all be done in Minneapolis!!). When they feel we are getting close, we will fly back to Boston to have a heart cath. Dr. del Nido said the numbers need to be extremely accurate with no room for error or question, and since they have specialists here for that, he wants us in Boston for the heart cath. Then, when the numbers look right, he will do a full biventricular repair on Dylan. He seems confident that this is the best path for Dylan. That makes me feel confident about it too!”
Now that you’ve read Dylan’s story, aren’t you in complete awe of this beautiful kid? When I began compiling his story, through the generosity of his mom letting me piece together something (which wasn’t very hard because she does such an awesome job keeping supporters updated, even as busy as she is!), I found myself smiling like crazy at Dylan’s photos. We know that all children have something wonderful to add to this earth. But Dylan… buddy, there is just something incredibly extra special about you. You make hearts MELT. Mwah!! You keep rocking those scars like the rock star you truly are!!