Respect the Experts: Part One

When I started to write this post it became really long. I decided to break it up into parts so I could cover the ground without wearing out the reader. This first part is about the seriousness of critical congenital heart disease (CCHD).  To put it bluntly, I now know hundreds of parents whose children have died from CCHD, and yet the general public (including friends and extended family of those facing CCHD) doesn’t seem to understand what it cannot see.  Subsequent posts will cover complexity, prognosis, and the social context of grief.

Let me be clear and upfront. While it may seem I’m attacking those who haven’t faced CCHD, it’s the exact opposite. I am defending those who have faced and do face CCHD from the misconceptions of those who have not. If your friend, daughter, son, cousin, niece, etc. is dealing with something this huge, you are definitely feeling the pain too.  That said, you’re always a step removed from the immediacy of the diagnosis and the primacy of the threat.  The threat is real and lasting, and I hope this series helps people on the outside understand it better.  Of course you can get the same perspective by reading my book, Heart Warriors, A Family Faces Congenital Heart Disease, but we’ll call this the CliffsNotes of CCHD.

I recently read a message string in a private Facebook group posted by an expecting mother.  She’s expecting a child with a single ventricle heart, and her family isn’t exactly respecting her expertise about her unborn baby.  They’ve dismissed her assertions about the severity of the baby’s condition, the facts of which are indisputable as it’s the leading cause of death from CHD of all the CHDs in newborns. CHD itself is the most common and most lethal birth defect.  The harsh reality is that this mom is absolutely right about the expectations she’s attempting to set. She educated herself, she’s seeing top doctors, and she’s coping with an overwhelming situation.

Being an expecting or new mom to any baby is a bundle of sleep deprivation, insecurity, and constant questioning of your own judgement.  Being a heart mom is normal amplified by death-defying.  The new heart parents literally are defying death on a high wire, and there is no time or space for anyone’s critique of their performance.  Studies have shown a large number of mothers whose children have been in an ICU suffer from post traumatic stress disorder. It is traumatic to see your child near death; it simply is.  Really, how could it not be?

I’ve been so blessed over the years that my own family on both sides has been beyond supportive of Jim and me as parents and decision-makers, not just with Liam’s health but with his daily life and exposure.  Many family members have asked thoughtful questions and wanted to learn about CHD.  Most have helped fund-raise for CHD research and participated in and even planned events.  If they have opinions or misgivings, they keep them to themselves which  I genuinely appreciate.  So I come to this post from a place of observation rather than impact. While I’ve never personally been affected by most of these issues, I’ve been up on that wire and I’ve been watching my peers up there for more than ten years.  This is what I learned in the past decade, and it’s sage advice for those back seat drivers in other people’s’ lives lived quite literally on the edge.

It Really  IS That Serious

I’ve  heard mothers complain that their parents or in-laws refused to refrain from smoking around their newborn babies – their heart babies.  These children have survived open-heart surgeries and are extremely fragile, and yet their own grandparents refuse to extinguish or get bent out of shape when the child’s parents won’t visit their carcinogenic nicotine clouds.

Likewise, many relatives and friends act put out because the heart-parents request a higher standard of hygiene.  What they don’t understand about heart kids, especially kids with only half a heart, is that their lungs are maxed out along with their hearts.  The cardiovascular system depends on the lungs too. Some the most severe heart defects result in an imbalance between the blood to the lungs, back to the heart, and the blood to the body.  You don’t mess with the lungs because it messes with the heart.

Spend even five minutes in an intensive care unit and you will be taught proper hand washing by a medical professional.  During Liam’s many hospitalizations our hands literally bled from all of the hand washing we did.  These parents are well-trained, and it’s a lesson that’s worth sharing.

If you doubt the seriousness of CCHD, think about this: Liam has been to the ER three times. He has NEVER waited in the waiting room.  He’s been sent straight back and given an immediate IV every time.  In fact until he was three years old and past his most major surgeries, he never waited in the pediatrician’s office. We were directed to take a private entrance.  We were directed by medical professionals to bypass their own bureaucracy to limit Liam’s exposure to viruses and bacteria.  Even today when Liam saw his pediatrician for an annual exam at age 10, she sent him for a CBC test because he has an anomalous set of tiny hemorrhages on his legs, and we’re checking it out just to be safe.  This is the doctor’s idea, not mine.  If it was my healthy daughter we would wait it out.  When Jim, myself, or Moira have been to the ER, our minimum wait time has been close to one hour.  Think about that a little, do you know anyone else who gets a fast pass at the ER?  Me neither, except kids with CCHD.

When Liam was about 20 months old his roommate in the CICU was a little boy from a Native American Indian Reservation who was airlifted to Denver with the flu. He had heart defects, and the flu was nearly fatal for him.  RSV is another nasty, nasty virus that puts thousands of US babies in the hospital every year – and those are HEALTHY babies.  RSV is particularly dangerous to heart babies, and it’s particularly common in day-cares, preschools, and elementary schools.

This entirely rational fear of viruses often leads to issues where the babies can’t go to daycare (Liam’s cardiologist advised against it) and social isolation to protect the child.  This is particularly relevant when the child is having multiple staged surgeries and is not in good health.  Had Liam gotten RSV before his second open heart surgery, not only could he have died from the infection, if he lived he would be too weak for the surgery and might have died from the wait.   Yes, they often “look” healthy, but they’re missing HALF OF THEIR HEARTS.  There is no cure for that and no margin for error.  Have you ever known someone to grow back a limb?   As of 2013 humans cannot regenerate muscle, and the heart is the most important muscle; you can’t live without it.

Additionally, not all newborns are conveniently born outside of flu season.  Ours was, he was born in April and was had his first three surgeries by September.  Unfortunately, when Liam had his fifth surgery (third open-heart) it was because he was so sick it was urgent, and it was February. That’s when we had our flu-afflicted neighbor.  Heart families are not trying to ruin family traditions by staying home with their babies to protect them between massive open-heart surgeries.  Yes, it’s sad when families have to abstain, or when they ask you to stay away.  But, it’s not about the extended family’s feelings, it’s about the child’s survival. It really is life-or-death.

Liam did not go to my mom and step-dad’s wedding reception. In fact Moira, Jim, and Liam all stayed home and I ducked out early. Why? Because he was having his fourth open-heart surgery just four days later.  Once again, his health was declining and we could not risk a wait from some infection caught at a big social gathering.  Had Liam incubated a virus from that party before getting  the triple infection that nearly killed him after his surgery, he would have been even weaker and probably wouldn’t be alive today. Yes, it’s sad that we missed this big event, but we would be missing our son even more if he had died.  This is serious stuff. These are not conditions that tolerate risk, so parents need not tolerate it either.

So. . . when a new heart mom doesn’t want a runny nosed four-year-old or anyone else, really,  touching her baby, it’s for good reason.  This goes back to the lungs.  Should the lungs become severely inflamed and/or congested, the heart starts over-working, and that can spell disaster and even death for any fragile newborn, but it’s even worse for a heart baby. These are serious concerns, not petty slights.  In life everyone must choose their battles.  When the risks are weighed and on one side is the possibility of  stinging a relative or friend’s feelings or and the other side is losing a child to death, the battlefield is pretty obvious.  My cure for this conflict is an elixir of equal parts humility and empathy.  One is bitter and the other is sweet, but they compliment each other nicely.  Why make parents choose?

Read Part Two about the complexity of critical congenital heart disease (CCHD).

May 12, 2003 - 21 lines going into a 7 pound baby
May 12, 2003 – 21 lines and a ventilator going into a 7 pound baby – when this is how you start life, you do whatever you can to prevent going backward.

7 thoughts on “Respect the Experts: Part One

  1. Awesome, I have a daughter, who when she was born we were told she would live to be maybe two, June 1, she graduated from high school and now wants to attend college. I have great friends and relatives who understand about not exposing her to germs and second hand smoke. When she was very little, our church family would let us know if they were sick and we would not make it to church, or they themselves would stay home so we could attend the church service. We have been fortunate in that she doesn’t have to go to the ER very often, and has only been hospitalized a handful of times outside her two open heart surgeries. She has a half a heart too. She is truly an amazing young woman.,

  2. Great article. I wish I had this to share before my son was born with his CCHD. He will be going for his Fontan completion (5th open heart surgery) next month. I will definitely share this with others before then.

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