Harper's Tetralogy of Fallot Fund

On September 7th, 2017, Harper Elizabeth was born weighing 7 lbs. 10 oz. and 20 inches long.  She is our rainbow baby and we were so excited for her arrival.  We were released from the hospital the next day, Harper and mom were both healthy and happy.  We were scheduled to see the pediatrician for her first wellness visit on Monday, September 11th, 2017.  We were so eager to go to her first appointment.  They weighed Harper and she lost a little bit of weight but nothing that caused concern.  They checked her eyes, ears and nose.  The pediatrician checked over all of her extremities and said she was a bit jaundice but nothing serious that required attention.  Lastly, it was time for her to listen to the heart.  This took a bit of time and when she was done, she explained that she thought she heard quite a loud murmur.  She left the room to check with pediatric cardiology to see if they could fit us in that same day.  Our hearts sank.  We left Harper's first wellness visit so concerned and scared. 

At 2 p.m. that same day, we met with the pediatric cardiology team.  They checked Harper's oxygen levels, did an EKG and also an echocardiogram.  When we met with the cardiologist after the results came in, we were told Harper had a severe congenital heart defect; Tetralogy of Fallot.  TOF is a rare condition caused by a combination of four heart defects that are present at birth.  Harper has a large hole between the lower chambers of her heart, an obstruction from the heart to the lungs, her aorta lies over the hole in the lower chambers and the muscle surrounding the lower right chamber is thickened.  We were told to look for the following symptoms; TET spells (baby turns blue), sweating with feeds and exhaustion/hard time breathing during and after feeds.  This will in turn cause Harper to lose weight.  We left this appointment feeling very scared, anxious and undereducated about her condition.  Treatment for Harper's condition requires open heart surgery.  They like to complete the surgery around 4-6 months.  However, it is dependent upon her symptoms.  Therefore, surgery could really be at anytime. 

Surgery will most likely be performed at Children's Hospital in Milwaukee.  Typically it is a 5-7 day hosptial stay and about a 6 week recovery period after being released from the hospital.  We are currently seeing the doctors once a week for weight/symptoms check and to check her oxygen level.  As hospital bills and travel expenses start coming in as well as an extended time away from work, we will need help being able to afford it all.  I have already depleted all of my vacation/sick time at work for maternity leave.  FMLA is unpaid, but secures my job.  We have the love and support from our families and friends, however, we will also need support to help pay for hospital stays, travel expenses and our typical monthly expenses.

These donations will help us be there for Harper together.  I will be able to take significant time off of work to be with my husband as she recovers.  We will be able to pay our mortgage and other bills as well as cover our travel expenses to and from Milwaukee and cover any hospital bills not covered by insurance.  Harper's surgery is inevitable as this type of defect doesn't auto correct itself.  Babies diagnosed with TOF and left untreated only live to about the age of 20.  However, if treated and properly cared for after open heart surgery, she can live a normal, full adult life.  We thank you in advance for your support.  We will continue to update you on her journey.

Ryan & Stephanie Lenz
  • Anonymous 
    • $500 
    • 46 mos
  • James Kellermann 
    • $100 
    • 46 mos
  • Mike & Kelly Piehl 
    • $100 
    • 46 mos
  • Anonymous 
    • $100 
    • 46 mos
  • Renee Every 
    • $30 
    • 46 mos
See all

Organizer

Stephanie Lenz 
Organizer
Green Bay, WI
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