Every year, 100,000 babies don't make it to their first birthday because of CHD.
Avelyn Marie Stahlman-Pickel | Heart Warrior of the Week

Avelyn Marie Stahlman-Pickel is our Heart Warrior of the Week! Little Avelyn is the embodiment of a survivor. In fact, we’re pretty sure that if you were to look up the definition of “survivor” on Google, a photo of her would pop up the second you hit search. This remarkable little girl has endured so much as a result of her handful of heart defects, which include Tetralogy of Fallot[1], pulmonary atresia[2], and major aortopulmonary collateral arteries (MAPCAs)[3]. The Tetralogy of Fallot and pulmonary atresia were discovered at her 20 week ultrasound while the MAPCAs was found during her first open-heart surgery. Avelyn would later acquire tricuspid valve[4] damage, coarctation of the aorta[5], obstructed superior vena cava (SVC)[6] and an SVC to right pulmonary artery (RPA) fistula[7].

Despite her diagnosis and rough start in life, Avelyn has been a fighter since the day she was born on December 17th, 2015. She has fought through five open-heart surgeries, she as fought through an additional five catheterization procedures & an experimental stent placement, she has fought through countless life-threatening moments that many wouldn’t make it out of, and she fought through 450 consecutive days in the hospital.

  • First open-heart: A shunt was placed to encourage growth within the pulmonary arteries.
  • Second open-heart: The misdirected arteries resulting from MAPCAs were rerouted into a single vessel. Corrections to the RPA and left pulmonary artery (LPA) were performed. A tricuspid valve repair due to endocarditis[8]. A partial ventricular septal defect (VSD)[9] repair, Avelyn was placed on ECMO[10] after this surgery.
  • Third/Fourth open-heart: Coarctation of the aorta repair. More tricuspid valve and RPA revisions. Fenestration[11] of the ventricular septal defect (VSD) and atrial septal defect (ASD).
  • Fifth open-heart: Chest exploration due to mass compressing of the right lung which was found to be a result of a large hematoma[12].
  • Catheterizations: Either diagnostic, or to repair pulmonary atresia and SVC which narrowed due to scar tissue from ECMO placement and removal.
  • Experimental covered stent placement: A covered stent was placed in her heart as it was determined a traditional stent would not have worked. This treated her SVC to RPA fistula and opened her obstructed SVC all in the same procedure. This was done on a compassion-care basis and is not FDA regulated. She underwent this experimental procedure because she couldn’t tolerate another open-heart surgery, which would normally be the preferred method of treatment. The covered stent is working perfectly and there are plans to write a medical case report detailing Avie's diagnosis, treatment, and amazing success with this type of procedure!

chd, CHd awareness, congenital heart disease

This small but mighty girl will undergo another catheterization procedure at the end of the summer to assess her pulmonary arteries, doctors are hoping to see growth. She will also require valve up-sizing of her right ventricular outflow tract and a kidney transplant in the near future.

Avelyn is currently on more than 16 medications with eight administration times throughout the day. She is also on dialysis and in need of a kidney transplant, which will require immunosuppressants[13] when the time comes. Many of her current medications and supplements are needed because of her renal failure, the hope is to wean her of off some of these post-transplant. She is on strict fluid restriction due to kidney failure and is severely developmentally delayed because all that her little body has gone through in her first year and a half of life.  

Avelyn’s Mom, Somer, says the following about her baby girl:

chd support, chd support group

She is transcendent, pure, tenacious and she has an unwavering will to live. Everything about Avelyn inspires me. She has had such an incredibly difficult and unfair start to life. She has struggled to survive since the day she came into the world. She knows nothing but the struggle and smiles through what would easily shatter me. Her first year of life has been marred by sedation drugs, negative touch, and pain stimuli. Though she only smiled a total of four times in her first 11 months of life, her spirit has since began to blossom, slowly but surely. With newfound wellness, she greets loved ones and strangers with a wide smile, even on the bad days. She sees the beauty in things I take for granted and she savors love and affection. Her sweet personality shines brighter than I could have ever hoped. Her unwavering, joyous, life-force and her tenacious will to live and love captures the hearts of all she encounters.

Beyond Avie’s actual medical well-being and the lack of CHD research funding, I worry constantly about the state of America’s leadership and healthcare system. I worry that she won’t be able to get the care she needs and deserves because some see her and those like her as a burden to society. I worry about her growing up and living among such ignorance and judgement while also dealing with the harsh realities of chronic illness. I pray she can see her self-worth despite the labels politicians will inevitably slap upon her.

 

[1] A CHD that includes four defects in one: a large VSD, pulmonary stenosis, right ventricular hypertrophy, and an overriding aorta.

[2] Instead of opening and closing to allow blood to travel from the heart to the lungs, a solid sheet of tissue forms. So blood can't travel by its normal route to pick up oxygen from the lungs.

[3] Arteries that develop to supply blood to the lungs when normal pulmonary circulation is underdeveloped. Instead of coming from the pulmonary trunk, supply develops from the aorta and other systemic arteries.

[4] A valve in the heart that prevents back flow of blood into the right atrium.

[5] Narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body.

[6] The large veins that carry deoxygenated blood into the heart.

[7] An abnormal vascular connection leading to diversion of blood flow.

[8] Inflammation of the lining of the inner heart.

[9] A hole in the heart.

[10] Life support.

[11] A strategic surgical opening.

[12] Localized swelling that is filled with blood caused by a break in the wall of a blood vessel.

[13] Anti-rejection medication.

Comments

Lori Jenkins

Lori Jenkins said:

Truly a miracle is avelyn. Miracle of miracles. And somer and Sean are amazing as well. Many parents would crumble under such stress. And praise be to THE GOD OF HEALING. Through whom all has been possible. The surgeons and medical team have been skilled instruments in his hands and were ministers of comfort as well.

SONJA YOUNG

SONJA YOUNG said:

AVELYN IS A MIRACLE & THE STRONGEST HUMAN THAT I HAVE EVER ENCOUNTERED. WATCHING HER STRUGGLE TO LIVE, HAS BEEN TORTURE, & LEAVES ME SCARRED & IN AWE @ THE SAME TIME. I HAVE WATCHED IN AGONY AS HER PARENTS HANDED HER OFF TO SURGEONS TIME & AGAIN… IT WAS NOTHING SHORT OF GUT WRENCHING. WITNESSING THIS PRECIOUS SOUL ENDURE SURGERIES & PROCEDURES THAT WOULD FELL MOST ADULTS, BROUGHT ME TO MY KNEES ON MORE OCCASSIONS THAN I CAN COUNT. I PRAISE GOD FOR HIS LOVE & UNENDING MERCY, AS HE BROUGHT THEM THROUGH THE MOST HEARTBREAKING OF CIRCUMSTANCES & HAS GIVEN THEM A CHANCE TO LIVE AS A FAMILY… SOMETHING THAT MOST OF US TAKE FOR GRANTED.
EVERY GRANDPARENT WISHES ONLY LOVE & WONDER FOR THEIR GRANDCHILD. I DO AS WELL, FOR AVELYN. SHE DESERVES TO BE HELD, LOVED, & SHOWERED WITH ATTENTION. SHE DESERVES TO LIVE LIFE WITHOUT SURGICAL INTERVENTIONS, TUBES, SEDATIVES & PAIN MEDS. SHE DESERVES TO BE A BABY LIKE EVERY OTHER. SHE DOESN’T DESERVE TO HAVE HER CHEST OPENED ANYMORE. 5 TIMES IS ENOUGH…SHE DOESN’T DESERVE THE KIDNEY DIALYSIS THAT SHE ENDURES DAILY. SHE DESERVES WHATEVER MEDICAL ASSISTANCE IS AVAILABLE TO GIVE HER A CHANCE @ A “NORMAL” LIFE. LOOKING @ THE SCARS THAT RUN FROM HER CHEST TO HER THIGHS, MAKES ME REALIZE JUST HOW MUCH SHE DESERVES. SHE, AS WELL AS ALL OF THE LITTLE LOVES WHO DIDN’T SURVIVE, DESERVE RESEARCH. THEY & THEIR FAMILIES, HAVE MORE THAN EARNED IT.

Creel Pickel

Creel Pickel said:

Avie is my hero and always will be. I would gladly wait all day to see one of her smiles. They truly light up her face. Her eyes are incredibly intense and expressive. I have promised to myself to try never to complain, as the absolute worst I have ever dealt with pales compared with some of her most trivial (and i use that term only in a relative sense) issues. I am head over heels in love with this little girl.

Anit Lake

Anit Lake said:

Our Lord Jesus must have something extremely important for this precious one. I know it is difficult to understand “Why” a sweet life has to endure such . We don’t understand but God has a plan. Bless you and this precious baby girl. Lives are changed because of her.never give up, faith, Hope, Love for all of you.

Leave a comment