Pediatric Cardiology Check-Up for Our Daughter Holly

My daughter Holly has a cardiology check-up Friday morning. She is now being seen every six months instead of every year because her cardiologist noticed a negative trend in her blood flow of her pulmonary artery. I admit I am worried. We've had good news for years from her doctors, even clearly some that surprised her doctors, and the last two appointments haven't been as easy.

My cardiologist and pediatrician have had to give me bad news before, some that left me crying. I hate to cry in front of my doctors; they're so wonderful, though, so professional and at the same time warm and calm. They deliver their news in a way that the blow is gentle even when it hurts.

At the last visit to the cardiologist, we were told that she was going to need another heart surgery. We always knew that was a possibility, but were happy and un-threatened every year she received glowing reports from her cardiology visits.

Holly was born with tetralogy of fallot, which is a specific heart condition only seen in people who have down syndrome (I've been told). She had four holes in her heart, a partially formed valve, a narrow pulmonary artery and her right ventricle was smaller than her left (a 60/40 [left/right] comparison).

Holly at 6 months, 1998:
She had open heart surgery at a year old. The surgeon used some of her own tissue, and some donor tissue, to reconstruct her valve, and repair the holes. He reconstructed the valve in a manner that created a better balance between the two ventricles than 60/40.

Throughout her first year, she needed oxygen initially at nights, then steadily more often until she was on oxygen round the clock. After surgery, she dramatically improved and went on oxygen only when she got pneumonia shortly after her surgery, or when she has been very sick over the years.

Holly with daddy the day of surgery, right before sedation, Oct. 1998:

Prior to her surgery, there were times when her arms and legs would become "mottled," with a slight purpling. Initially, she was hospitalized for observation. They told me she had "sluggish" blood; her circulation was slow. Well, what was happening was her heart had to work twice (or four times) as hard to pump oxygen into her body as normal.

We learned that Holly has long lungs (and an enlarged heart), a fact every x-ray technician appreciates being told (saving each one from having to repeat the x-ray for failure to capture all of the lungs).

Holly has never had to go on medication. When she got cellulitis a couple of years ago, she had a hard battle fighting that infection. Her cardiologist was out of the country at the time we went in to the hospital. The cardiologist on call who took her case immediately wanted to put her on heart medication, even though I explained to him that her regular cardiologist had not felt it was necessary. He wanted to send her home on it, too, along with her IV antibiotics (she had to be on those for over 8 weeks, round the clock). I resented sending her home on heart medication because she had never needed it before, and I wasn't convinced she needed it now on a permanent basis. Thankfully, shortly before we went home, Holly's cardiologist returned from her trip, and visited her at the hospital before we went home. She determined she didn't need the medication and cut it.

At Holly's last cardiology visit, we were told to watch for significant signs of heart issues. I was thinking, "shortness of breath" or breathing struggles, but the cardiologist said we needed to watch for any complaint of chest pain.

Holly hasn't complained of anything like that. She has had a cold the last few weeks and I've noticed the "mottling" again on and off, too. It happens occasionally when the seasons change and she gets cold, or when she's not drinking enough water. I can usually remedy it fairly rapidly if I pump in the fluids.

I'm genuinely nervous about Friday's visit. The cardiologist has said that they won't do another open heart surgery until the risks of not doing the surgery outweigh the risks of doing the surgery. It all sounds pretty terrifying to me, but I've been there before and I've faced this fear with my children many times when they've been sick.

The image that keeps coming into my mind is of her recovery shortly after surgery. She was in the PICU, with all kinds of tubes and wires all over her body. She was lying in her crib sleeping, which was the only time I felt I could sneak out to the go to the bathroom or grab something to it (when my husband or parents weren't there).

Holly, in PICU after heart surgery, with 4 IVs, 2 pacemaker connections, 3 drainage tubes, and 3 respirator tubes in mouth and nose; Oct 1, 1998, day of surgery:
Her crib was the first one you could see as you walked in the PICU doors. I left to get some lunch, and when I came back, Holly was sitting up with a nurse holding her and checking her vitals. Holly saw me and reached her arms out to me. I can't remember if she called out to me; I would have to look through my journal to remember if she was actually talking at that point.

All I know is that that moment said MOM in such an amazing way.

It's not the only time she has touched me so deeply. Her sweet spirit reached out to me before she was born, when I was pregnant with her. I was six months along when we found out she had tetralogy of fallot, and likely down syndrome. We were pretty shaken up, and after my husband headed back to work, I drove myself home in tears, and kept asking myself if we had done something to cause this to her, to inflict this condition on her. At the time, there was a possibility she wouldn't survive at birth, but that was just the beginning of her brushes with death.

I cried and cried, and then there was just a flash of knowledge in my mind, and I knew it was her: "I chose this body." It was just like that, this impression into my mind that was very firm, "I CHOSE this body," followed with, "You are my mom, stand up for me."

It came from her. It changed everything for me. I felt my responsibility as her mother to look out for my baby, to fight for her life and look out for her rights as a child with special needs (don't all our children have "special" needs, anyway? They're not clones of each other!)

I knew she had down syndrome, even though we didn't get the test until after she was born, and it didn't mean anything to me in the least. She wasn't broken or inflicted or cursed. She has down syndrome.

Holly is one of the most genuine, guileless, loving, gracious, thoughtful, talented human beings I have ever met. I have always felt that she brought faith into our family, faith and hope, and a reminder to slow down and pay attention to what is really important.

I don't want to lose her. I pray that all will be well, and that we will face whatever comes with courage and faith, and love.

Holly & her brother playing with the laundry 9 months after surgery, July 1999:



















Holly in Moab in 2006: