For Zach Tatum and his wife, Taylor, the excitement started before the ultrasound.
The young couple, hailing from Travellers Rest, South Carolina, found out they were expecting their first baby in May 2017. Things moved quickly after that; making plans, going to checkups, Taylor going back to her teacher job when summer ended, and the gender reveal party when they announced the eminent arrival of their son, Landon Hall Tatum.
“Everything was perfect,” Taylor said. “We started our registry. We bought a crib. We shared the news of our baby boy with everyone we could!”
During the 20-week anatomy appointment, the ultrasound tech found a cyst on Landon’s brain. The doctor assured the Tatums such cysts were common and normally went away within a few weeks, but an appointment was made with a specialist to be safe.
Two weeks later, during which Zach and Taylor fervently researched, worried, and prayed about what would happen, they took another ultrasound and, after the longest 20 minutes of their lives, the doctor was able to make a prognosis.
The problem was not a cyst, the doctor said, but his stomach.
Landon had been diagnosed with a congenital diaphragmatic hernia (CDH), meaning his stomach had moved into his chest cavity beside his heart, right where his lungs need room to grow.
“My heart sank,” Taylor said. “The doctor began going through options and details as our heads begin to spin.”
The next day, the couple returned, and Taylor underwent an amniocentesis for further diagnosis.
“Before the doctor started, he said, ‘I can already tell by your faith the answer, but would you like to terminate your pregnancy?’ We said absolutely not.”
The procedure was successful, and a few weeks later, they learned Landon also had a heart condition, tetralogy of fallot. A referral to a state hospital followed, and within 24 hours, the Tatums found themselves in a tiny room with 11 doctors, nurses, and nurse practitioners, all of whom informed them Landon only had a 35 percent chance of survival.
“We were urged to seek ‘comfort care’ after birth,” Taylor said. “We could not accept this.”
More research followed, on CDH, the best hospital, the ideal doctors, and the preferred care team. Landon’s CDH would have to be treated first, so they decided to head for Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. The tests were repeated, and the John Hopkins staff calculated a 75 percent survival rate.
“We left with a feeling of excitement for the first time in weeks that our baby boy was going to be okay,” Taylor said.
It was during this trip that the Tatums discovered the Ronald McDonald House close to the hospital, where they stayed and met four other CDH families.
On January 31, 2018, Landon was born weighing 5 pounds 11 ounces. Within four hours, he was placed on ECMO and had his repair surgery the following morning. 19 days later, Landon was able to be taken off ECMO. He was the first patient admitted into the brand new CCDH unit at Johns Hopkins All Children’s Hospital.
ECMO INSERT: Extracorporeal membrane oxygenation (ECMO) is a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill baby. This system provides heart-lung bypass support outside of the baby’s body.
A few days after being taken off ECMO, Landon made a trip to the catheter lab to have a stent placed until he could undergo full heart repair. But complications arose. The stent did not hold, and Landon ended up in an emergency open heart surgery. Another 12 days on ECMO followed, and eventually doctors switched the ECMO cannulas from Landon’s open chest to his neck.
Requiring the use of a ventilator full time, Landon eventually underwent full heart repair. He weighed close to eight pounds at the time.
The challenges of caring for Landon have been great. While Taylor lost her teaching job, Zach has been able to retain his job with the South Carolina wildlife department, which has been very helpful in giving him the time he needs to care for his family.
“I’ve met other dads who needed to get a job transfer or only got a small amount of time off before losing their jobs, so I’m very thankful,” Zach said.
Throughout all this, the Tatums made use of the Ronald McDonald House, both in St. Petersburg and Cincinnati when Landon’s health needs sent them there. Having stayed at RMHC longer than other families dealing with CDH, it’s been tough on the young parents to see other families go home, but they’ve enjoyed additional support from those families even after they’ve left.
“We’ve made good friends at the house, people from all over the U.S. we can now network with,” Zach said. “It’s been helpful to see all the posts online.”
The Tatums have also been fortunate with wonderful community support back home. There have been fundraisers for his family and they get lots of packages. Zach says the experience has opened the eyes of his community, many of whom didn’t know what RMHC did for families. He and his wife love how RMHC is so family-oriented.
“My grandmother came to visit after being so worried,” Zach said. “She was convinced everything would be doom and gloom, but then she ate dinner at the house and cried to see how nice everything was and how friendly the residents are. Everyone is positive and upbeat.”