Paying It Forward: Session 5 Round Four

We have been BUSY since February. We have helped 15 families thus far this year. Our funds were raised from blacklight gauntlets at every location, burpee challenges, the golf outing, DBBB merchandise sales, the and the Irish Fest 5k!! I would sincerely like to thank each and every one of you who participated in these events or donated to our cause. You each hold a very special place in my heart. DBBB wouldn't exist without all of you. I am beyond excited to see how we finish the rest of the year.

I am going to post backgrounds about the families we have helped in rounds since we have helped so many. Some families have chosen to keep their story private. Please continue to pray for all of these families!

Karter Goodchild

 For those of you who don’t know me, my name is Tiffany (Everding) Goodchild and I am originally from Tripoli, IA.  After completing my graduate program at UNI, I resided in Cedar Falls working as a school psychologist in the Waterloo Schools.  During that time, I was fortunate enough to have my path cross with Mr. Ryan Matthew Downs.  He was beginning a new fitness program and knew that I had an interest/experience with kickboxing.  Long story short, I was the first female trainer for NLXF, alongside Ryan and Creed, when they began their first session.  Aside from the fact that I was in the greatest shape of my life, the best part of the program was truly the relationships I formed.  As cliché as it sounds, NLXF genuinely felt like a family.   I met my husband, Kole, in 2011, and moved to Minneapolis to be closer to him.   It was difficult to say goodbye and end the NLXF chapter of my life.  Five years later, we are married with two children.

This brings me to how our story intersects with the Do Better, Be Better foundation.  Four weeks ago, I was 39 weeks pregnant with, what I thought, was a healthy baby-our second child.  Every prenatal check-up had produced normal results, with no cause for concern.  On June 26, 2016 I felt my “mommy instincts” kicking in.  I hadn’t felt my baby move all day.  Kole and I went in to my care team to make sure things were ok.  Although I couldn’t feel them, I was having mild contractions and our baby was not responding to them.  Hence, the doctor recommended we schedule a c-section for that day.  As the spinal tap was being administered, the look on my doctor’s faced changed.  Immediately she called for an emergency c-section.  Our baby’s heart-rate had dropped to a dangerously low rate.   The doctor performed the fastest c-section of her career- start and end time 6:08 p.m.

It was a baby boy, but he was not breathing.  The NICU team was there ready and waiting, and resuscitated him within minutes.  Critical minutes where his little brain was deprived of oxygen.  Karter Koy Goodchild remained in the NICU for one week. Much later we also learned that 2-3 days prior to his birth, a very rare thing happened in utero.  One of the blood vessels from my uterus to the placenta had a “sinus bleed.”  This means that although my body was delivering oxygen and nutrients to Karter, they were going right back to my body through this bleed.  By the time he was born, he lost almost all of his blood.  In essence, his little body was being deprived and poisoned without any warning. 

In addition to this, and with him being born not breathing, he also experienced seizures the first night he was in the NICU.  All of this lead to severe brain damage.  Karter underwent the cooling/warming process, as he had serious swelling in his brain.  Despite these efforts,  the MRI and EEG indicated that Karter’s damage was too severe.  That is, the team recommended removing life support and ending his life.  They were certain Karter would not experience any quality of life.  We were devastated, but were not presented an alternative.  The only option was to cherish the minutes or hours Karter would live after his ventilator and other life-supporting interventions ceased.

To everyone’s surprise, Karter lived.  After two days in the board room of the NICU, we were sent home with our sweet baby boy and placed on hospice.  The first 5 days were agonizing.  We watched our chubby, adorable baby slowly fade.  However, Karter’s body began to change.  He began to nurse.  He began to cry.  His breathing and heartrate remained steady.  .

Two hospital stays, another MRI, and additional EEG later we now know more about Karter’s brain, the damage that exists, and potential explanations for why Karter lived (when they predicted he couldn’t).  Despite the incorrect doctors’ initial predictions that could only survive minutes-hours, the fact remains that his brain is severely damaged.  In fact, his MRI scan is the worst our neurologist has ever seen.   While his brain stem and cerebellum were spared, the vast majority of his brain cortex is irreversibly damaged.  Given this, the doctors all predict that Karter will not walk, talk, or visually understand his world.  In addition to the neurological deficits, Karter was also born with “multi-organ dysfunction.”  Virtually all of his organs were severely damaged.  All of this is overwhelmingly devastating. 

As of September 15, here is what we know about Karter’s disability and prognosis:  Karter has severe cerebral palsy.  This means he will not have any control over any of his limbs.  Spastic quadriplegia is the technical term.  This means he will not ever be able to feed himself, dress himself, roll over, sit up, crawl, walk, etc.   Additionally, they don’t think he will ever be able to communicate in a meaningful way, and most definitely will not be verbal.  Our neurologist described his overall functioning to be very “simple” compared to most . Because of the brain damage, he will also likely develop epilepsy, which manifests itself through seizures.  In fact, he underwent a video EEG yesterday (September 14) and determined at this point he is not having infantile spasms (how epilepsy presents itself in infants), but that it could develop in the next 2-3 months.  When this happens we will have to consider intervening with medicine, some of which can have severe side effects.

They describe his head as “microcephalus” because his head will never grow at the rate that is expected of children and infants his age.  He also has “cortical visual impairment” (CVI), which means that his eyes are physically and developmentally unharmed, but because of his severe neurological deficiencies he will not visually process or understand his world.   He is also at risk to lose his suck/swallow ability, and could need a feeding tube to sustain nutrition.  Because his brain is so damaged, and his organs suffered so much dysfunction, Karter’s body will not be able to fight off and respond to illness the way healthy bodies do.  This means he is more at risk to have fatal difficulties related to any illness he acquires.  In terms of life expectancy, nobody can say for sure.  However, they predict he could have months to years.  He likely will only live to be a toddler (if he survives his first flu season as an infant), but could live much longer than that depending on how his brain and body develops.  If what the doctor’s say turns out to be true, Karter’s medical and care needs will be intense.  He will never have any level of independence, and will likely require a wheel chair with special accommodations.  The older and bigger he gets, the more difficult meeting his care needs will be.   And eventually he will leave this earth much sooner than most people. 

This has drastically changed the course of life for our family.  I have chosen to stay home with Karter, which means we are financially dependent on my husband’s salary.  My role has shifted to Karter’s primary caretaker, and my schedule is filled with trips to his pediatrician, occupational therapy, physical therapy, speech therapy, and a monthly check-in with his neuro-palliative doctor.  Our almost-two-year-old daughter will have her own journey being a sibling of someone with a disability.  This will certainly alter the childhood we expected her to have.  While our initial plan was to expand our family to 3-4 children, we are unsure if we will ever be in a position to fulfill those dreams.   Should Karter live years, we will likely have to move homes to one that is wheelchair accessible, as well as purchase a vehicle than can install a lift for his chair. 

We are humbled, overwhelmed, and forever grateful for the generosity and love people have shown.  From the bottom of our hearts, thank you.  Please keep us and our #kourageouskarter in your prayers.

With Love,

Tiffany and Kole Goodchild

Stacy Burt

Stacy Burt is a husband and father to five children.  He also has two grandchildren.  He was born in Waterloo and has lived in the area throughout most of his life.  He was in the United States Marines and later worked for Bertch Cabinet Manufacturing as a driver.

In September of 1999, he had a large brain tumor removed.  As a result of the tumor, he lost all hearing in his left ear, has permanent numbness on his face and shoulder nerve damage. 

Ten years later in September of 2009, a very large malignant brain tumor was removed.  During surgery, Stacy had two strokes and numerous other issues that he continues to struggle with on a daily basis, including vocal and facial paralysis, issues with his left eye, difficulty walking, numbness on his entire left side and delayed motor skills.  He temporarily had a tracheostomy and feeding tube.   He completed 33 radiation treatments. In 2011, a metastisized tumor was removed from his spine.

In May of this year a third brain tumor was partially removed and

he has struggled with many seizures and a very serious infection.  He had pneumonia, meningitis and was septic.  He has great difficulty swallowing so has a feeding tube and until recently, a tracheostomy.  A permanent shunt was placed before leaving Iowa City.  

Recently he was found to have peritoneal mesothelioma and fluid surrounding his heart.

Stacy completed inpatient rehabilitation at Covenant and currently is working on various therapies in outpatient rehabilitation.  In early September he had pinpoint radiosurgery on the remaining brain tumor. 

Stacy tries to remain positive and plans to continue fighting, even though he has had continued setbacks.  He is definitely a fighter and hopes to be able to be with his family for many more years!

We sincerely appreciate the gift from Do Better. Be Better.  It was a lifesaver during the eight weeks that Stacy was hospitalized in Iowa City and we were very, very grateful!