When life gives you lemons… Friends make lemonade for you

Leighia Mckenzie’s mom, Collette Pohlman, said her daughter has wanted children for several years, so much so, that she even underwent a surgical procedure to help her conceive.  Then eight months later came the news Leighia had been waiting for...she was pregnant.  But the joy that filled her heart would all-to-soon turn to worry when a routine ultrasound at 20 weeks showed that something was not right with the baby she was carrying.  Little Eivin Andrew Grandgeorge was diagnosed with a rare birth defect, Esophageal Atresia (EA).  He was missing part of his esophagus (the tube that connects the mouth to the stomach).  This defect can be life-threatening in its most severe forms, and it could also cause long-term nutritional concerns.  In addition, up to half of all babies born with EA have one or more other birth defects.

Leighia knew the road ahead was going to be a long one, so she started doing research on the defect and making plans for her baby’s care right away.  But as the old saying goes… the best laid plans, no matter how carefully thought out, may still go awry.  And that’s exactly what has happened for Leighia and her son, Eivin.

She was scheduled to deliver early by C-section, but Eivin had other plans. Leighia’s water broke on April 27, 2021, while she was in the bathroom at Robert Blue Middle School, where she was working as a paraeducator.  When a student came in, she asked her to go and get Andi Smock, the teacher whose room she worked in.  Andi came to her aid, quickly getting Leighia out to her van to transport her to Clarion.  Because Eivin had not absorbed any of the fluids in utero, Leighia’s water was still leaking when she arrived at the hospital. Clarion transferred her to Mercy Hospital in Des Moines where she gave birth to Eivin that night at 10:45pm, weighing 5 pounds 5 oz.  After about a month at Mercy, she and her son were sent to the Steads Family Children Hospital in Iowa City as they have more experience treating babies with EA.  And that’s where they both still remain...but that’s not where their story stops.  Really, it’s only the beginning of a very long journey.

“She’s one strong mama,” said Smock, who talked about how Leighia did everything possible to prepare for her son’s condition, and continues to fight for his best treatment.

As Leighia was making plans for Eivin’s delivery and treatment after birth, she had found in her research a hospital in Colorado that she thought would best be able to correct his EA problems.  Her insurance denied it, which really turned out to be a good thing because that led her to the discovery of a treatment known as the Foker Process that is being done at Boston Children's Hospital.

“That’s probably one of the absolute best places I can try to get him,” said Leighia.

Unfortunately, insurance has denied that too.  Why?  According to Leighia, because Boston is “out of their network” and they say Iowa City has a type of treatment that can be done there.  It’s called a split fistula, or delayed anastomosis esophageal atresia, which is a medical incision on the neck to run the esophagus on the outside of Eivin’s neck so it can drain while he is still growing.  This surgery would have to wait until he is 12 weeks old. Leighia added that this surgery would also most likely need to be done more than once as her child grows.

“To me, that’s very traumatic to see my child’s esophagus on the outside of his neck,” Leighia said, noting the possibility of choking, or a fly going in causing him to choke on it, or even possible infection.  

“But if Boston continues to be denied, I fear this will be my only option.”

That’s why Leighia continues to fight for treatment at the Esophageal and Airway Treatment Center at Boston Children's Hospital, one of the only programs in the country specifically designed to care for children with all forms of TEF/EA. The Foker Process they use encourages natural growth and lengthening of a child's existing esophagus with the end result being an intact esophagus. This surgery could be done between  9 - 10 weeks of age.

“To insurance, he’s a statistic and a number sign, and that just kills me because he’s my baby,” said Leighia.  “Boston is where most families go for long-gap EA like Eivin...if Boston can’t fix it, no one can fix it.”

In the meantime, Eivin and Leighia remain in Iowa City, waiting, and hoping the insurance, or someone, hears their plea and helps them make their medical journey to Boston.  Eivin continues to struggle, having more and more “blue spells” where he can’t breathe because of tracheomalacia.  In times of high stress, like when he has his diaper changed or blood is being drawn, his crying causes his trachea to collapse.  

“His condition is very, very real and very, very serious,” explained Leighia.  “If not for his G-tube, he couldn’t eat and grow like he should.”

So with each passing day, she continues to fight the good fight to get her son to Boston.  She’s written a letter to Governor Kim Reynolds; she’s trying to get a single-case exemption through Medicare that would cover the transportation, stay and surgery; she’s looking to be considered a Compassion Care Case since Boston Children’s Hospital is a Shriner Hospital; she’s petitioned Boston to join Iowa Medicaid so that not only Eivin can get care in Boston but any family without going through the same process can too.

“I’ve done everything I possibly can to get him there - even asked Iowa what it would take to bring in the Boston Dr. to Iowa to do the surgery...but my hopes aren’t high for that,” admitted Leighia. “I don’t think I’m asking anything unreasonable in asking to go to Boston for the surgery.”

As an added bonus, Boston has an after-care program that would help the family learn how to best care for Eivin as he learns how to swallow, how to eat, and other things that come naturally to babies who do not have AE.

“Boston is definitely our best choice, it is definitely where we need to be.  I just want to bring Eivin home as soon as possible,” said Leighia.

Through all of this, Leighia has been grateful for her family and friends who have stood by her, specifically Andi who was with her from the time Eivin started to make his way into this world until now.

“I’m so very thankful to have the support of Andi…I didn’t even know her before I started (working) at the middle school...and we instantly clicked,” said Leighia.  “I can’t see my life without her now.  She definitely has an impact on everybody she touches in life and it’s always positive. I'm lucky to get to call her my friend.”

One of the ways Andi has shown her continued support for Leighia and Eivin is by setting up a lemonade stand with her summer school students in order to raise money to help with Eivin’s medical journey to Boston.  She used it as a teaching aid, letting the two boys decide when and where they would set up the stand, discussing what ingredients they would need, how they would design the posters, how much they would sell a glass for, etc.

“When I found out they were organizing a lemonade stand to help us out, it made me ugly cry,” admitted Leighia.  Then, when I found out how much money they made on the first of two days, it made me ugly cry again. I couldn't believe all the love and support we have received.”

Although Andi and her students sold the lemonade for only $1 a glass, the tip jar was stuffed to the rim with $5, $10, and $20 bills both days.  Leighia’s friends had turned her “lemons” into lemonade in hopes of it helping to offset medical expenses, if even only a little.

This gives her hope.  Knowing there are people who support her and will help her do what is best for her son helps her keep going.  But that doesn’t mean she does so without fear.

“It’s so scary to think about agreeing to a surgery because what if something goes wrong?” she questioned.  “I don’t wish this adventure on anybody...but I’m going to continue to fight until I get a ‘no’ from Boston that they can’t or won’t do the surgery because then I know I’ve done everything I can to get him the best care possible.  I’m just hoping a miracle comes through, some way, somehow.”