Inspiring Stories for Congenital Heart Disease Awareness Week

This week is Congenital Heart Disease Awareness Week, and I feel lucky to have been nominated for the Inspiring Blog Award at just the right time, thanks to Shelagh at The Open Jar. In thanks — and in an effort to pay it forward — I’d like to share and nominate these inspiring blogs of people in health struggles with their children — and one blog that offers fuel to get us through it.

  1. Little Earthling Blog: Apollo’s Story — the first story of a double aortic arch that I ever read online.
  2. Love That Max — a beautiful story of a mom and of kids with special needs who kick butt
  3. Charlotte’s Journey Home — the journey of a child with CHD and her awesome advocate of a mom
  4. Superman Sam — a cancer story followed by nearly the entire north shore of Chicago last year as Sam fought valiantly until his family went on to carry the torch
  5. Cybele Pascal’s Allergy Blog — practical advice for when food allergies and restrictions seem overwhelming

Thank you, Shelagh! If anyone out there has someone to nominate, please feel free to share a link in the comments.


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Thank You, Vaccinating Parents

There are lessons and important details we learn that apply only in very specific situations. Soldiers retain this kind of knowledge after a war, we know, as their bodies instinctively remain alert, their legs bending into a crouch they can maintain for as long as it takes. Former high school soccer players who drilled for hours resume bouncing a ball on their knees, twenty years later, the moment it makes contact with their right shoe. This knowledge has staying power, whether we want it to or not.

What to do with all of this now-useless knowledge?

I learned a million strange lessons in doctors’ offices and hospitals with Sammi in the years that spanned cardiac surgeries, gastroenterology drama, and  everything else her little body gave her to manage. This mastery I had over her health — the details only I could have described — has never gone away. I am vigilant; I am well-trained; I am fast-twitch muscles and marathon endurance.

This is why I panic at the thought of un-vaccinated children.

When Sammi was eighteen months old, she was finally in childcare just a few hours per week. She was under eighteen pounds, miserable to feed, and deeply, deeply beloved. She’d had ear tubes, a bronchoscopy, surgery to slice open the extra, troublesome arch of her aorta that had been choking her, and had her esophagus dilated. She was on anti-reflux medication. Her trachea, despite the surgery designed to free it, was at best thirty-five percent open.

Whooping cough, without a doubt, would have killed her.

One day, I dropped her off at childcare to spend three hours working, and I got a call several minutes later with the news of her fever — 101.3. I picked her up, took her to the doctor, and learned one of those sneaky lessons that never goes away, regardless of the fact that I’ll never need it again:

When your pediatrician sends your feverish baby for a chest xray, worry.

When the radiologist sends you to the lab for a blood draw before your baby even has her shirt back on, worry.

When the blood lab turns you away at the door and says your pediatrician wants you back in her office immediately, worry a lot.

Sammi had pneumonia. Her fever barely broke for days, the antibiotics gave her a horrific diaper rash, and her lungs were so wet and her constitution so weak that she lay on my chest in a sling and beat it slowly with her cold, sweaty hand, limply crying mama, mama, mama. I was right there. She was out of her head.

She lived through that pneumonia and another one a few months later, disconcertingly in the same lobe of the same lung. If that had happened one more time, there would have been another bronchoscopy to find out what was wrong with that lung. Thankfully, she never got that third pneumonia.

If Sammi had brought pneumonia to a friend’s baby who had consequently died from it, I would have been devastated and felt horribly, life-alteringly guilty, but I would know I might not have been able to prevent it. If an un-vaccinated baby, whose parents were within their rights to refuse vaccination, had brought my baby whooping cough, she would have died. baby with baby doll

Sammi had just over one-third of the airway of a normal child. You couldn’t tell by looking at her. On a good day, she probably had to work harder for air than most people.  I’m not questioning the right of parents to refuse vaccines for their children, but the fact remains that the consequences to babies like Sammi are real.

Is she one in a million? That I don’t know. She is one in a hundred million million for me, the baby I fought for, kept alive under hideous circumstances, gave over to a surgeon to slice and hospitals to pump full of drugs. It wasn’t easy to keep her alive. Vaccines? There was never a doubt I would send her into the world with anything I thought might protect her.

There are things everywhere that endanger the lives of our children, including other children in a variety of ways: bullying, gang violence, and, not least of all, communicable diseases. Would I throw my child in front of a bus to save yours? I must admit that I would not; the chances of her death would be too much for me. That’s too much risk. Would I teach her gentleness and kindness and generosity in a world that may, in the end, take advantage of her for it? Yes. That, I will do. That has a risk, but it’s smaller, hopefully, and falls in line with my values in a way I refuse to compromise.

That’s how I protect your children. That’s my thank you for keeping her alive, my thank you to the universe and to the other parents who cared for her and about her enough to wash their children’s hands, keep them away when they were sick, and yes, to vaccinate them. If there was a way for me to thank every single parent whose vaccinated children came in contact with Sammi in the years of her compromised airway, I would do it.

You helped me protect her. Thank you.


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Prescription for Crisis Management

There are support groups for the parents and families of children with diabetes, cancer, and Celiac disease. There are support groups for the parents of special needs children and for the devastated parents of children who have died, and for other more-common medical issues with names and protocols. Though all of those paths to support come at a terrible price to all involved, the group of fellow travelers offers a space for release and understanding.

There was no name for Sammi’s odd combination of issues. There was no support group for “post-vascular-ring-repair with a side of just-won’t-eat and occasional-pneumonia-and-sinus infection.”

David and I hobbled along after our daughter’s heart surgery as our friends and family watched from the sidelines, worried for and with us, but never truly understanding the daily knot in our stomachs over whether or not she’d eat, whether or not that cough was getting worse, whether or not we were paying enough attention to our older daughter. The sense of emergency was dulled but not gone.

In retrospect, I can see that there were places into which an intuitive doctor could have inserted some help with our mental state. As a system, children’s medicine in this country largely ignores the parents except as chauffeurs, cooks, medicine dispensers and, sometimes, bandage-changers. Even the children themselves are only approached as bodies to patch and treat until they are in the hospital, at which time a social worker from “Child Life Services” will arrive in the room to play checkers or suggest deep breathing. Sometimes the parents of children admitted to the hospital are offered free massages.

The number of issues that can arise when the medical system ignores the social and emotional needs of a family in crisis — especially long, drawn-out crisis — have a real effect on the actual body that system is looking to patch and treat. Parents living in fear and confusion make decisions based on fear and confusion. Parents who have no resources run out of steam and give up on whatever they must in order to make it through another day. Compliance with drug regimens and treatment plans and follow-up tests requires the energy and fortitude to keep track of it all, not to mention the income required to manage the expense.

People often asked “How on earth did you get through that?,” that being whatever the latest crisis might have been. The answer is that we dug deep and we were lucky, and we talked and talked about it to anyone we thought might be able to help. We’re not praying people, but we threw lifelines out into the world and hoped people would hold them for us. I was once criticized by a family member for being too open about Sammi’s health issues, scoffed at for sharing her story with a parent in her baby music class. It was a crucial survival tool for me, to be able to talk like that.

I learned about coconut oil — a great calorie booster — from a clerk at the grocery store who saw me squinting at protein powders and asked me why I needed them.

I learned about tonsil and adenoid surgery — which Sammi had at age 2 — by asking friends if they knew anyone whose kid had gone through that.

I learned about How to Talk So Kids Will Listen and Listen So Kids Will Talk from a parent in swimming lessons who observed my frustration with a tantrum.

I learned a tremendous amount by doggedly pursuing useful knowledge everywhere I went. It was effective but exhausting. Imagine if doctors or their nurses were empowered to prescribe that kind of help to their patients. Imagine the people without support groups who could benefit from being treated like a family instead of like a body with servants.

Sammi is more than a body, and we are more than her caretakers. Families need help. There should be a prescription for that.

baby with babydoll

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Laid in Arms

hospitalDavid, Sammi and I slid into the hospital the morning of her first surgery the way a reluctant toddler comes down a slide. All sorts of practicalities handled, bags packed for a hospital stay, all that remained was the hour of waiting in a room with a baby we might never see again.

If that sounds maudlin, that’s because it was. The risk to this surgery was smaller than most cardiac surgeries, but there is always a risk to surgery. The doctors would slice into my smooth, perfect, luscious baby’s back, pull her ribs apart, and decide which branch of her aorta to clamp and remove. The very thought of it made me weak. And yet, my job was to hand her over to these doctors who didn’t know anything about who she really was. They didn’t know she could sing. They didn’t know how much her four year old sister adored her. They didn’t know about my ambivalence about her for the first months of her life, ambivalence that I worried would make the universe believe that I didn’t want her, after all, and maybe it would take her away from us to punish me for it.

We passed Sammi around the pre-operative room — David and I, his mother, his sister, and her husband. After I refused to give her to a strange doctor to take away, screaming for me, they gave her a shot of Versed, an anti-anxiety drug that made her loopy and cross-eyed. When the anesthesiologist came to take her away, she waved at me as she was carried down the hall in his arms.

Once she was out of sight, I fell sobbing into the arms of my sister-in-law. She and I had never been close, but sometimes, the right person at the right time becomes a lighthouse. She was solid and soft at the same time. I think I fell on her because she was the very nearest person, and all my hold-it-together just dissolved once Sammi was truly and in every way out of my hands.

The details of the day — the waiting, the surprise visit with pastries from David’s aunt, the moment when the surgeon came to tell us that everything went well — these are the uninteresting snapshots of someone else’s life, the ones we look at politely but cannot connect to our own. The universal is in the humanity of kind people when you need it the most. That hug. Those pastries. David’s hand on my shoulder when we learned that they were closing her incision, and my memory flash of his hand on my shoulder as Sammi had been born, with me flayed on an operating table, paralyzed, unable to help her. She’d lived through that. She would live through this.

I couldn’t do anything to keep Sammi alive except to go and find the people who knew how, and to lay her in their arms.

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My Name is Not Mom

not momFirst and foremost, I want pediatric doctors who are smart, brave, and skilled enough to keep my children alive.

Secondly, I want pediatric doctors who will not frighten or dismiss my children.

Thirdly — and isn’t it always at best thirdly, where I come in? — I want pediatric doctors who can see me and the other adults around my child as valuable pieces of the puzzle they need to assemble in order to accomplish the main goal (see “first and foremost” above). There was never a chance that I would take either of my daughters to see a doctor who didn’t qualify for my first criterion, and if there were multiple options that fell into that category, I’d make the decision based on the best qualified in my second criterion.

I largely gave up trying to fulfill the third.

In fact, over the years, I stopped bothering to even tell pediatric doctors my name. They almost never remembered it. Every phone call from a physician began, “Hello? I’m looking for the parent of Samara Lewis?” When I said, “This is Debi,” invariably the answer would be “Are you a parent?” Even voicemails or messages I left with advanced practice nurses — the gatekeepers of the medical specialty physicians — in which I would leave my name would be returned with that same lack of regard for my individuality. I was “the parent of Samara Lewis” or, even worse, doctors and nurses would simply call me “mom.”

“Well now, mom, don’t you worry. We’ll see her in our clinic this afternoon.”

You know, mom, sometimes babies cry and we don’t know why.

“Is this mom? Nice to meet you. I’m Dr. Susan Smith, and I’ll be doing the anesthesia today.”

Despite the multiple scrawls all over every chart Sammi had in every doctor’s office, apparently there was nowhere for anyone to write my name. I fantasized about wearing a name tag: “Hello, my name is NOT MOM.”

Every so often, I’d be graced with a “Mrs. Lewis,” but no doctor ever looked me in the eye and said, “Debi, you spend every minute of every day with this baby. What do you think?”

The beginning of the final path, the one that led to the first big cardiac diagnosis, came in the fall of 2006. A friend had been visiting with her baby, who had been oozing green snot and gave Sammi a cold which had landed her in the hospital. Our pediatrician — a wonderful doctor who has still never, to this day, called me anything but “mom” — suggested we take Sammi back to see the otolaryngologist who had diagnosed her at 6 weeks with laryngomalacia. Freshly home from the hospital, I called that practice and waited on hold, nursing a dozing Sammi in my lap.

When I got the advanced practice nurse on the phone, I explained the story to that point: diagnosed with laryngomalacia at 6 weeks, multiple hospitalizations for respiratory infections, low oxygen saturation, chest retractions, very tiny for her age, wet-sounding breathing, and me feeling nervous and suspicious about her age and her reactions to colds.

“Sorry, mom,” she said, “we can’t really get her in to see anyone until November.”

“November?,” I asked, shifting Sammi up to my shoulder to burp her, “That’s two months away! That’s really the soonest?”

“Yes,” she said, “I’m so sorry. You can keep calling and see if anything opens up.”

I sighed, “Ok, I’ll take the first available in November.”

The nurse paused, “Is there static on this line?”

“Oh,” I said, moving Sammi back down to my lap, facing down, “No, sorry. That’s my baby. She breathes like that after she nurses. It’s loud.”

“That’s your baby?” the nurse asked, quietly.

I said yes.

“Can I hear that again, mom?” she asked.

“Sure,” I said, suddenly both frightened and hopeful. I picked Sammi up to a seated position on my lap and held the phone near her mouth. She rasped and gurgled as always. I brought the phone back to my ear. “Was that enough?”

“Yes,” she answered. “I’m going to get her in this week. Can she come in this week?”

We could. Mom and baby could come in that week, and did, that week and countless other weeks, over and over to that children’s hospital to see that and many other specialists. In all that time, only one doctor would ever call me and my husband by our names. It seems a small thing — and it was, in comparison to the quality care Sammi received — but dismissing me as anything but the next in the series of moms, the role and not the person, that made it harder.

Few medical professionals ever really saw me. They looked right through me — I became a ride back and forth to the doctor, a reporter of facts, a dispenser of medication, a cook for whatever medically restrictive diet Sammi would come to be on over the years. I was lower-case mom, and I resented it, even as I put that resentment aside in the name of answers and treatments.

It doesn’t have to be this way. I’ve communicated with many other parents of chronically ill children — or even perfectly healthy children — who have pleasant, personable relationships with their children’s doctors. Specialists seem less friendly, with surgeons the least likely to know even their patients’ names. This doesn’t make them bad doctors, and I’m willing to admit that it may be this detachment that allows them to get through years and years of what would otherwise be painful encounters with frightened human beings in pain. Disassociate, and what they’re left with are a list of problems to solve, not lives to improve.

Funny how that works, isn’t it? I would come to learn that lesson by osmosis.

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