Cora's Story

Wednesday

The good patient. Medicine is a team effort.

When I was pregnant with Cora, during delivery, and during our time in the hospital, I made it my goal to be a "good patient."

To me, being a good patient meant not making waves and doing as much as possible for myself. Being a good patient meant listening carefully to nurses and doctors and following their every suggestion.

I was such a bad patient in the process.

I'm going somewhere with this, I promise. First of all, I was lucky to have excellent care in the hospital, this isn't a post blasting my hospital or hospitals in general. Far, far from it.

I got an email the other day from an online friend. She thanked me for putting myself out there and working to share what I've learned about congenital heart defects with moms and moms to be (I think you're a mom to be from conception of a little one, but whatever, that's another blog post).

She said she appreciated my efforts to make woman active participants in their care and their child's care.

That phrase is super key. Active participant. Being an active participant in your care and your child's (born or unborn) makes you a good patient.

I'm not just asking woman to think about asking for simple pulse oximetry screening for their newborn, I'm asking them to join in their care. That's my ultimate message. I just happen to focus on the congenital heart defect world especially prenatally and shortly after birth.

I truly believe one day soon, every baby will be screened with pulse oximetry, but Cora's work, the work on this blog, and through the young nonprofit started for her will be just starting. We'll continue to strive to give mothers good evidence-based suggestions.

By trying to please the staff in the hospital and during prenatal treatment, I was making their job harder.

Ultimately, we're all interested in a healthy mom and baby.

Before Cora died, I'd never heard the terms participatory medicine, e-patient, or Medicine 2.0. All are related and deal with a medical system model where the patient is an active participant in their medical care. Makes such sense, doesn't it?

An official definition from the Society for Partcipatory Medicine:

"Participatory medicine is a cooperative model of healthcare that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.

The Society was founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels"

It's our body, or our children's body, of course we should be active in our health.

I think it's helpful for pregnant woman to think along those lines.

I have a new definition of what makes a good patient. A good patient researches all aspects of their care and speaks up when something doesn't feel right to them.

Online, I met Mary Ellen. Her son James died not because he had a congenital heart defect, but because of medical error. Through her, I learned that on average one medical mistake is made a day in the hospital. Because hospital workers are humans. Who doesn't make a tiny mistake or two at their job? I guarantee you you'll find at least one typo/grammar mistake in this article. By participating in our care, we can stop these mistakes by asking the nurse to wash her hands or by asking questions about what's being done and why.

Being a participant in our care makes the job easier for health professionals. But, we also hold a responsibility to be the best active participants we can be. Common sense tells me that in order for participatory medicine to be effective, respect from all team members (the patient, doctors, nurses, etc) is a must.

Cora taught me how to really be a good patient.

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I'm interested in your thoughts on this one and keeping the comments open. How does the participatory medicine model apply to pregnant woman and to moms?

Saturday

December 6

It’s creeping up you know.

I feel it looming. Even a few months away.

Fall is sweeping in.

And, we all know what follows fall, dark, cold winter nights.

But, it’s not just the gloomy winter days I dread.

It’s hard to even write.

It’s…

Well…

Anniversaries…

Of the bad sort…

They’re almost here.

Last year at this time, I was in my final trimester of pregnancy.

It goes fast, that final trimester.

I can feel that anniversary.

I feel different.

It’s like every part of me knows it’s creeping up and is bracing for the full impact of the dark days.

I’m learning that the anniversaries are some of the hardest of this.

Worse than you could ever imagine.

I’ve felt off for a little while. And, suddenly, it came to me why.

That horrible day, it’s almost about to repeat. Almost here again.

Thursday

The post every pregnant woman should read. (Share this, save lives)

I decided to write it all down. Everything I wished I'd known about the most common birth defect. I know when I was pregnant, reading information about SIDS or car seat safety was tough, but after realizing that knowledge might save my child's life should they have one of those conditions, I powered through.

Reading about CHD is something every pregnant woman should take a few moments to do. Knowing the signs and symptoms and researching detection methods saves lives.

I know sharing Cora's Story with pregnant friends and family isn't always easy. But, I hope that you'll help. That you'll share this post (share on Facebook or Twitter using the links in the footer). No family should ever be blindsided by the most common of all birth defects, occurring in about 1 in 100 births. Just remember, I'm not a doctor. Just a mom.

I present to you, a crash course in congenital heart defects (CHD), or what I wished I'd known about CHD before giving birth.

I found out after my daughter died that she had a congenital heart defect. When I first heard about it, I thought it must be something rare, for me, an educated woman that read everything I could while pregnant to no nothing about it. Turns out, it's not rare at all as far as medical issues in children go. Congenital heart defects are a leading cause of death in children and infants. Some places, name CHD as the leading cause of death in infants. But, and this is a huge but, most CHD children live. In fact, medicine has improved outcomes for these patients so well, that more adults currently live with CHD than children. It's a hidden disability for these adult and children patients.

About CHD
Over 35 different types of CHD are known, and each defect looks a bit different in each patient. So, each CHD heart is like a snowflake, no two alike. Chances are you know someone with a CHD. Some defects require nothing but an extra doctor's visit every few years, while some are more serious and require a series of surgeries. Often someone figures out that they or their child has a CHD after talking to me about Cora's story. They just weren't aware because the doctor never used the term "congenital heart" with them.

While we're on the subject, congenital heart means simply born with, so a person with CHD is always born with the issues.

The exact cause of CHD isn't know. There's a genetic link, but CHD can happen to anyone. For example, there's no known CHD background on either side of Cora's family.

Nothing detects congenital heart defects all the time. But, early detection improves outcomes. The defects can go undetected into adulthood.

There's not really a cure for CHD either. Surgery can mend the heart and medications can keep things under control.

This makes CHD even more scary. Awareness doesn't mean much unless there's a reason to make everyone aware. And, there are things that pregnant woman can do to reduce the odds of having a CHD baby, having a child go undetected, and picking up on the signs of a CHD.

While pregnant
Take a folic acid supplement. In fact, talk to your doctor about starting this before you're pregnant. There's a link to folic acid deficiency and CHD.

Don't smoke even if you're thinking about getting pregnant. Quitting when you find out isn't really an option. The heart develops early in pregnancy.

You know the ultrasound? The big one around 20 weeks where you find out if you're having a boy or girl? It's also to look at the baby's development. Ask your ultrasound technician about the heart and if all chambers are present.

After birth
Ultrasounds, fetal echos, and doctor suspicion after noticing irregular in utero heart rates all lead to detection. But, many defects aren't found until later.

Ask if the doctors or nurses hear a murmur. A murmur often occurs and can be harmless, but can signal something else.

Request your child be screened with pulse oximetry after 24 hours of life. Your baby should be calmed and anything below a 95 might signal a need for extra testing. Talk to your doctor about adding the pulse oximetry in while your child is at the hospital. Some hospitals routinely use this simple, cheap, noninvasive test, but others don't. This easy test saves lives. Ask for it.

Memorize warnings signs of a possible congenital heart defect. In a newborn, dusky coloring, turning blue, trouble feeding, rapid breathing, sweating along the forehead, and tiring easily are warning signs. Report any symptoms to a doctor and request an examination.

Please share this important post to bring us one step closer to making sure every mother, father, and expecting parent knows about the most common birth defect.

Monday

The light at the end of the tunnel.

Sometimes, I read a quote or story and it sticks with me for days after.

Do you ever do that? Read a really true quote pertinent to what you're currently going through and carry the quote with you?

I saw this on Twitter a few days ago:

This hit home to me on many different levels.

I've talked how rough this month has been. How depression creeped in. Over and over, I've talked about just feeling blah. How I've been sleeping too much and been feeling uninspiried.

I know it's time to call for medical guidance to treat depression, but I also know, this is more than depression. I went through something totally life changing. I realized within hours of Cora's death, I wanted this tragedy to make better, that the only way I was going to get through is if I became more compassionate to others.

This tweet reminded me that sometimes the best way to get over anxiety and depression is to stop with the inward thinking, to think about others. Anxiety doesn't feel quite as bad if by doing something I fear, I help others.

What a great tool in the fight against the dark thoughts and long nights. Certainly, I'll need more help than just doing good for others, but it's pretty effective.

This reasoning also helps with some social anxiety I've been having since Cora died. Hard to feel too much anxiety in social situations when you're listening closely and really showing compassion to others around you.
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It's my favorite day of the month, speaking of thinking about others. It's the 30th, which means it's Wear Pink for Cora! A day to do a good deed, and of course, to wear pink.

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I've been so out of it this month, I've been horrible with returning emails and messages. If I haven't gotten back to you, please resend your note.

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Cora would have been nine months old today. Hug your baby tight.