Meet Indy

In February 2016 our world changed forever.  We went in for our routine 20 week ultrasound and expected to hear nothing but good news.  We had 2 other normal pregnancies and healthy children, so our minds were far from ever thinking this time would be any different.  At the end of the ultrasound our OBGYN told us that there was a problem.  We went numb and started crying.  He told us that he believed Indy had HLHS, but we needed to see pediatric cardiology for confirmation.  I had been an ER nurse for years prior to becoming a family practice nurse practitioner.  Having medical background and knowledge, I knew I had to find information on what HLHS meant, as I had not heard of it before.  I searched for information and options, and what I found terrified my husband and I.  We looked at everything we could, and I filtered the information I was looking at to make sure it was from reputable sites.  Not one thing we found were we okay with that being our daughter’s life.  In searching, and I mean hours upon hours, and days after days, all I could find for options were termination and the 3-staged palliative surgeries.  Until one day, I came across that hospice, or comfort care, was an option.  My husband and I knew that was our decision.  What we learned was that HLHS was NOT a fixable heart defect.  Palliative surgeries would only prolong life until a transplant would be needed, and that’s a whole new game.  We knew, that if in fact it would be confirmed Indy had HLHS, we could not do surgery.  We knew we could not ask our daughter to fight a fight she could not win.  We didn’t just think “save our daughter”.  We thought about what her life would look like if she lived to be 7, 10, 18, 25, etc.  What would her life be like??  What we knew from all our research guaranteed that her life would be beyond difficult and painful.  We knew that we would not want that life for ourselves if we had HLHS, so we weren’t going to force her to have that life.  Our decision for comfort care was made out of the most pure love we had for Indy.

Not even 2 weeks after receiving the initial preliminary diagnosis, HLHS was confirmed with the fetal echo at the University of Iowa Children’s Hospital and Clinics.   That day we were offered termination 3 times, which we felt was not the right choice for us.  We then met with the cardiologist where he discussed the surgeries.  At the end of the appointment there had been no discussion of comfort care, so I asked.  Our cardiologist seemed to be taken back, as though he hadn’t ever had a parent ask that before, but he was very respectful.  He thought that it would be an option.  Fast forward a few weeks and the cardiologist called to tell me that the hospital would need to have an ethics meeting to make sure that our choice for comfort care was ethically appropriate.  A few weeks later he called again and informed me that in fact the hospital would support our decision and not a single person disagreed with our choice during that ethics meeting.  That spoke words to us.  We knew that a medical team cannot say it’s okay for a person to die if in fact the defect is treatable and manageable.  For everyone, including the cardiothoracic surgeon, anesthesia, neonatologist, and other staff, to agree with our decision meant that they knew medically that HLHS leads to a grim life.  If in fact HLHS would be fixable, they could not ethically support our decision.

The next few months were spent planning Indy’s funeral, enjoying time with her, making every moment of the pregnancy count, and talking with the hospice nurse.  From the moment we made our decision for comfort care, we never looked back or had regrets.  And I can honestly say 4 months after her passing we still have not had any regrets in our decision.  Don’t get me wrong, it was not an easy decision to make.  We wanted so badly for her to fight, to bring her home, and for her to have a “normal” life.  We had to remind ourselves that HLHS would not give her a great, or even good life.

Fast forward a few more months and it was induction day.  Due to my 2 previous very fast deliveries, I was induced so we could ensure she would be born in the hospital.  The labor was seemingly uneventful and easy, and at 8:15pm our sweet girl made her arrival.  We had immediate family and a few close friends of mine there to meet her.  Our family gathered in our room and we loved on her.  Indy got to meet her older siblings, Kail (2 years 10 months) and Jada (20 months).  We had Indy baptized with the hospital Chaplin, and then family went home since it was almost 11pm.  We loved on her as much as we could through the night, and the next day family came back.  We had quality time with Indy and she was never put down.  She received countless hugs, kisses, and snuggles!  Prior to the induction I made a list of things I knew I wanted to do with her, or get while she was alive.  During the day we took endless pictures, videos, read her books, played music, and so much more.  It was touch and go throughout the day, so we made sure to keep her comfortable with Morphine and Ativan.  At 5:51pm she passed away peacefully in the arms of my husband and I.  It was by far the most painful thing we’ve ever experienced, but with it we also felt a sense of proudness; and these emotions are still true to this day, 4 months after her passing.  We are so incredibly proud of how we chose to parent Indy.  We knew that surgeries would be doing something TO her, not FOR her.  In her beautiful 21 hours with us she didn’t know an ounce of pain.  My husband and I chose to give her the best life we knew possible, and in doing so we will endure the grief of missing her forever, but we can feel comfort in knowing we did not have Indy fight a fight she could not win.  We are passionate about our decision in parenting Indy and would not change a thing if we could go back.  All She Knew Was Love.