While the coronavirus has people taking into consideration older individuals who may have compromised immune systems, concerns about immune health have always been a concern for the parents of Theo, a four-year-old boy from Sherman who was diagnosed with Bilateral Multicystic Dysplastic Kidneys and possiblyPotter's Syndrome before he was born.
Bilateral MCDK and Potter's Syndrome are both caused by kidney failure and in Theo's case, underdeveloped kidneys causing him not to produce enough of the amniotic fluid that should have been surrounding him as he was growing in utero. Amniotic fluid is also pertinent when it comes to lung development in utero.
It was after an ultrasound in 2015 that mother Lauren Anderson found out that her unborn son's kidneys were not functioning properly, his lungs were under developed and doctors were giving him a zero percent survival chance.
“Everything had gone so smooth up until that time,” Anderson said. “He was so active. He was not kicking that much, but I could feel some flutters. But, in the third trimester with no amniotic fluid to help with lung development, I was told that there was very little chance of survival.“
Grandmother Caroline Jackson explained that when a child is developing in its mother's womb, it acts as its own circulatory system. When the fetus urinates, the urine turns into amniotic fluid. The fetus then inhales the amniotic fluid and the fluid helps with lung development.
“So when children who have Potter's Syndrome are born, they are not dying of the kidney disease or the cysts on the kidneys,” she said. “They are dying because they cannot breathe since they have underdeveloped lungs.”
At the time, the doctors did not know if this was something that could be fixed or helped after birth. Anderson was told that she would probably give birth to a baby that was not alive. And, because she was in her third trimester and there were no known medications or surgeries approved that could help, she would have to go in to labor naturally knowing that her son would not live long even if he was not a stillborn.
Going into labor naturally was exactly what she did. She prepared herself learning about the possible limitations her son would have no matter how long his life was to be.
Children born with Potter's Syndrome can be born with clubbed feet, malformed hands, hemivertebrae, cataract, a recessed chin, low-set, cartilage-deficient ears and other abnormal physical characteristics.
“We knew we were going to do a c-section because there would be no amniotic fluid for a natural birth,” Jackson said. “I asked her specialist doctor if with a c-section that would improve the odds for a longer life. He said he only expected Theo to have a few months if that.”
The family planned to have photographers on site shortly after the birth to get first and last photos of the baby.
“I was having contractions for three hours before I woke Teddy and told him we needed to go to the hospital,” Anderson described the night she went into labor at 34 weeks pregnant. “They were getting closer and closer.”
According to her birth plan, Anderson wanted to give birth at Texas Health Harris Methodist Hospital in Fort Worth.
“He was breach,” Jackson said. “When he came out, his little butt was first and then his head came. When his head came out, there was this little button squeal.”
Anderson, Jackson, and father Teddy's hearts jumped.
“I said, 'Did y'all hear that?'” Jackson said. “Everyone said yes and right then the NICU immediately took him. The doctor ended up cutting the cord before Teddy could do it like we had planned.
“In my head, he was so loud,” Anderson said. “It was just once and it was just a tiny little thing, but it seemed so loud.”
Newborn Theo opened his eyes. And without thinking twice, the family decided to switch their plan from comfort care for the infant to life-saving measures.
That was four years ago.
“He is a champ,” Anderson said. “He has had six surgeries. He has had three different PD Cath placements, two g-button placements, MRSA three different times. He has only had one infection.”
Theo still has kidney problems though.
He does not ingest food or drinks other than water through his mouth. He has catheters that his family and nurse use to make sure he gets the nutrients he needs.
He still has very regular doctors appointments. He takes several medications, and he does dialysis nightly.
While Theo is a survivor of many things, his journey into the world was through unknown territory for his entire family. And, the terrain going forward is still unpredictable.
Theo is in need of a kidney. He has been placed on a North Texas transplant list and after months, he has made it to the top of the list.
“I got a call just yesterday,” Anderson said Thursday evening. “A nurse asked me if there was a kidney available, did we still want to go through with the surgery. Given the current situation and how transplant medications also weaken the immune system, I questioned whether this would be the best time for him to go through something like that.”
For more ifnormation on Theo visit http://www.Facebook.com/TeamTheoCashion. For more information about becoming a donor, visit http://www.UTSWLivingdonor.org.
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