Ryan’s Journey with VACTERL syndrome.

By Hannah, VACTERL syndrome, United States, February 23, 2021

Ryan

This is our happy, spunky, warrior baby, Ryan!!! He turned one in November with 6 surgeries under his belt!! 

While being completely fine in the womb, other than having one vessel/one vain in the umbilical cord causing him to be small(but healthy). Ryan was born with a rare disease that couldn’t be seen on sonograms.

When being delivered, they noticed he wasn't crying so they rushed to get a breathing tube down his throat but something was stopping them from being successful. They put him on a C-PAP to get him by until being flown from Tyler Texas to Dallas. Continuing his new born scan, the Doctor notices he had no annal canal. 

Dad and baby arrived at Medical City Dallas hours after delivery to meet with our DREAM TEAM of Doctors/surgeons. They monitored closely while coming up with a game plan. That same day they Diagnosed him with VACTERL Syndrome & our journey began. 

At day one of life, Ryan had a surgery to repair his tracheosophageal fistula AKA TEFistula, this means his esophagus had a hole in it causing it to be disconnected. Along with that he had a left side colostomy bag placed for the time being. 

Ryan was in the NICU for a month after that healing, growing, having tests after tests, learning how to suck/swallow/breathe while feeding. He was absolutely perfect. 

We finally got to come home, although the nurses felt like they were seeing a true miracle before their eyes because all the babies they’ve seen with this many complications were in the NICU for months & months, sometimes years. And to top it off they normally were on feeding tubes and/or had tracheae. We feel as if God knew we needed our baby home so we could fight these battles alone. 

We had many doctors appointments back and forth to Dallas after he was sent home to make sure the kidneys, heart, esophagus & colostomy were working properly! 

In February, we found out Ryan had what is called a tethered spinal cord. If this wasn’t fixed in a timely manner it would have cause Ryan not to be able to do a multitude of things including crawling/walking. So our surgeons came up with another game plan. 

We knew this was going to be a long journey, then COVID struck. COVID meant mom & baby Ryan had to do it alone, inside the hospital at least! 

In April, We had tests ran/PRE-OP done to help the doctors with the next phase. Before we could have our spinal surgery we had to get the anal canal made & inguinal hernias repaired. While doing the exploratory surgery for making his anal canal they found something unusual so they pulled his intestines out of his body to remove the mass that was connected to his intestines. 

Recovery was hard for this surgery, typically when a child has TEFistula the development tracheomalacia or esophagealmalacia, in Ryan’s cause he has both. This caused him waking up from anesthesia difficulty breathe because of his narrow airway. All while this was my first experience having a child & also his first surgery ALONE, Ryan flat lined. I watched the code team rush around the corner to do CPR, soon after that they brought him back to and kept him as pain free as possible and sent him to the PICU over night to be heavily monitored and have High Flow Oxygen. 

We spent 5 days recovering and we’re sent home to await the next surgery! During this time we had home health in and out of our home daily. But, we got to watch Ryan grow stronger, smarter, build his motor skills & watch his personality blossom. 

8 weeks later in June, it was time to have his spinal cord release. This was a fairly minor procedure but still scary because of spinal cord fluid & what had happened with anesthesia before that. But we knew he was a little older so his airways had grown a little more. His nurses knew to take him off the medication slower so he wouldn’t be in as much pain & we kept oxygen on him during the process. 

Recovery went well and again, we got to come home to recover after 2/3 days. We still had home health in and out(we had a fantastic nurse, Daphanie) but she also loved watching him grow. Durning this waiting period Ryan was learning to crawl and pull up on things!! We were then going back and forth to Dallas for dilations & checkups every two weeks.

Another 8/10 weeks(August) went by and it was time for our attachment surgery(we said goodbye to our home health nurse, boo). This illuminated his colostomy bag all together. This wake up/ recovery went smoothly, doctors were impressed by how quickly he was adjusting and we were out of there in a week! 

While most of our things were repaired, we now had to see our ENT about tracheomalacia/esophagealmalacia. After having a scope, We decided to schedule a procedure to repair his esophagealmalacia. 

In October, we went for our procedure. While in this procedure his ENT discovered his malacia was too far down for him to repair so we were referred back to our regular seurgon. 

During this time of waiting, Ryan caught Bronchitis, this weakened his immune system & he caught a stomach bug. While having that stomach bug he had an Ileus. This cause his body to weaken & his bowels to quit working. After two emergency trips and a life flight(they thought his bowel had obstructed & were preparing for surgery) our seurgon ruled out everything he could. Our worry was something from his surgery had torn or busted causing this pain. Cosmetic things were ruled out so our GI Specialist was called in. She discovered it was an Ileus & monitored us closely until he was eating/drinking again & having bowel movements. After a long week, we were finally sent home a day before Ryan’s birthday!! 

That next weekend was Ryan’s birthday party, the day of his party he had a choking spell. This caused him to turn purple/blue & to quit breathing all together. He was rushed to the ER. Doctors/seurgons were called and game plans were made. His diet was modified & we patiently awaited surgery in the first of December He had another episode durning this time. The week after Thanksgiving, we all tested positive for COVID and surgery had to be postponed. After Christmas we FINALLY got a surgery date. 

Ryan had another choking spell just recently again causing purple/blue & being rushed to the ER. We got there & they told us literal SECONDS later, he wouldn’t be with us today! 

 

On January 26th Ryan went in for a major surgery. He had 4/5 doctors & surgeons with him. They cut his sternum open, removing his thyme & connecting his aortic wall to his sternum. This released the pressure off of his trachea/esophagus & allowing him to have an open airway. His doctors were almost certain this will fix his chocking spells/noisy breathing/shortness of breathe!!(& it did!!!) He will be sewed back up having permanent metal in his body. This has been a MAJOR blessing to our family & Ryans life!!

Despite all of this, Ryan is a smart, happy, spunky, sweet, en energetic & hilarious WARRIOR babe with a testimony to share & scars he’ll think are awesome.

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