(Feb 2015) Brandy & Tres Johnson: A Miracle Story Part I

 Brandy & Tres Johnson

Brandy & Tres Johnson

When Brandy Johnson gave birth to her son Tres, she had no idea that her third child would be born with an extremely rare disorder.  Tres suffers from Diprosopus, a congenital disorder in which all or parts of the face are duplicated.  There have only been a few cases of the disorder with no definitive cure and a very short, if at all any, life expectancy.  Since the day Tres was born, Brandy has been a courageous and determined mother and has continued to be an exceptional parent with a newfound educated defiance against pessimistic doctors and anti-cannabis advocates.  With the love and support of her husband and two kids, Brandy decided without a doubt to fight for Tres' life.  

"We were unaware of any complications throughout the entire pregnancy," Brandy told us.  She was not unfamiliar with the regular doctors visits being that Tres is her third born.  She didn't miss an ultrasound with her doctor who birthed her first two sons however, her third time around was not the idealistic pregnancy experience.  Brandy felt as if Tres was growing normally and healthily while she was pregnant.  She thought she had a trustworthy relationship with her doctor and being that this was her third pregnancy, she assumed that she would know if something wasn't right.  During her doctors visits, her physician did not suggest any irregular development however, her doctor read her ultrasounds inaccurately.  It was until later that Brandy and her husband, Josh, were told that Tres had a noticeable cleft palate at three months, which is something her doctor should have definitely recognized.  

 After Tres was taken off the ventilator for the first time.

After Tres was taken off the ventilator for the first time.

At her final doctors appointment, Brandy was scheduled to be induced.  She signed the paperwork and her doctor returned to explain that he would be going on vacation and would not be delivering her baby.  Brandy was forced to have another physician, who she has never met, deliver her baby and never see her doctor again.  Terrified, Brandy went into labor with  a stranger as her physician attempting to have a natural birth with no epidural.  After hours pushing and both Brandy and Tres coming close to death, the doctors decided to do an emergency c-section.

Brandy woke up from the anesthesia in a panic, seeing six doctors in the room.  "Where's my baby?  Where's my baby," she questioned before she passed out again.  She woke up again to her husband and even more physicians in the room.  They explained what happened and she remembers feeling a huge sense of relief that Tres was alive.  The doctors asked for Josh's permission to sustain Tres' life because they were going to let him pass away.  Brandy and Josh always knew, without a doubt, that they would never give up on their son.  "I really didn't care what happened, you know?  From that moment we knew we were going to fight."

Tres is the only one out of 36 cases of Diprosopus who does not have a duplicated blood vessel in his brain.  Being a rare case of a rare disease, physicians have continuously been proven wrong when it comes to Tres' development.  Treatment for Tres has been an extremely difficult journey as the Johnson's have experimented with every medication and treatment option available.   Doctors did not expect Tres to live through his first hour after birth and are at a standstill on how to treat him.  Tres has shocked doctors and impressed his parents as he progressively grows but unfortunately as he grows, his epilepsy does as well.  At two months, Brandy realized that  something may be wrong because he would squint his eyes and they would get dark.   By four months, Tres was having noticeable seizures.  As he grew, his seizures became more aggressive and he began experiencing too many different kinds of seizures to keep track of their names.  

 Brandy, Josh and Tres Johnson

Brandy, Josh and Tres Johnson

Doctors recommended Tres take a very low grade pharmaceutical which is extremely dangerous.  Although every anti-convulsion had a strong possibility of resulting in death, Brandy and Josh tried every medication to treat Tres.  As Josh spent paycheck after paycheck on medical bills and Brandy stayed at home to care for Tres who experienced anywhere from 300-480 seizures per day, none of the medication he was prescribed seemed to work longer than two weeks.  Exhausting every option, they eventually decided to try a pacemaker-like device which connected to the stem of his neck.  The device was intended to shorten the seizures and did… for about a month.

In November 2014, doctors told Brandy that there was nothing else that they could do for Tres.