Wednesday, March 14, 2012

A Parent's Worse Nightmare

From the time Michayla entered into our lives, we knew she had a heart defect.  She was born 6 weeks early with her twin sister Shyann.  She was given a diagnosis of Pierre Robin Sequence, as well as a number of other issues.  We were aware that she had a hole, an Atrial Septum Defect, that would eventually need to be repaired.  Michayla was followed by a wonderful cardiac team at a premiere Children's Hospital.  It was thought that the repair would be done through an artery in the groin.  On her last Echocardiogram, it was decided that this was no longer an option.  Her cardiologist started the conversation by stating the hole is the size of a dime & unfortunately due to the location it wouldn't be able to be fixed as previously thought.  She continues on, letting us know that she would require open heart surgery.  No parent wants their child to have surgery of any kind; but to hear open heart surgery, it really was a scary notion.

Of course, the cardiologist assured us that everything would be fine & these surgeons do this everyday.  That may be so, but this is OUR child & we aren't really comforted by this statement.  The surgery was non-emergent but should be done before she gets much older.  At this time, she was not showing signs of a heart defect and it would be best to have it repaired before it did.

We gave it some thought and decided since she would be turning five in May, we'd set it for this summer.  This way she would be healed up before starting Kindergarten.  I called the office to let them know our decision.  The RN told me the Cardiac Team would review Michayla's case at the quarterly meeting.  We requested to have the surgery in July.

In the middle of February, I receive a call from the Cardiologist Office.  The RN informs me that the team had met & would like Michayla's surgery to take place in the next couple weeks.  I said, that's a lot sooner than July.....almost questioning the urgency.  She said, that is when the team wanted it done.  So to be honest with you, I'm not sure if they saw something that made them decide it needed to happen sooner, or they just ignored our request for doing it in the summer.  We had been noticing that Michayla was sleeping a lot more than usual, so maybe this was the right time.

We made arrangements to have her up in Portland the week of March 4th.  My husband had to take the week off from work & we needed to make sure the other kids would be taken care of.

Sunday, March 4th arrived & it was time to go to Portland.


  1. Thank you for sharing your story. My son was born in 2008 and we found out afterwards that he had an ASD, VSD and valve in need of repair. He was five weeks early too.
    He had his OHS three months later and has done very well. He has a Mitral Valve leak we are monitoring yearly.
    We are new to Oregon and have our first Cardiologist appt next month. It will be interesting to see what a new DR's prospective is. We have been told he will need another surgery and that the leak is slowly getting bigger.
    As for now he is a very energetic boy! :-)

    I hope all is well with your daughter,

    Mom to Ben, AVSD & Mitral Valve Regurgitation
    Group Coordinator, Mended Little Hearts of Greater Portland

  2. I hope things go well for you & your son. Its amazing to watch how fast these kiddos bounce back from such a big surgery. I hope your son doesn't have to have more surgery, but if he does that it goes as well as his first one.

    Michayla is healing up good, we've had no issues or problems. She's showing signs of renewed energy....which is making me tired It will be like having a new kid once she's totally healed!!