Baby’s first year is filled with many smiles and lots of tears—for both of you. But each of these four families faced more tears than usual after their babies’ unexpected health scares. Read their stories below, and find out what you can learn from their experiences to help keep your own baby safe.
Anne Garcia, 39, Houston, TX
Our second child, Ariana, was born in June 2014, after a completely uneventful pregnancy and delivery in Madrid, Spain, where we were living at the time. At 6 weeks old, she had a difficult night when she was gasping for air, so I rushed her to the emergency room. She was visibly weak, and no longer able to cry, just struggling to breathe, and was “mewing.”
Initially, doctors thought she had a blood infection, but within a few hours they realized the problem was with her heart; she was diagnosed with a critical congenital heart defect (CHD)—transposition of the great arteries. Typically children born with “transpo,” as it’s also known, have open-heart surgery (the repair is called an arterial switch) by 21 days old—Ari showed up in the emergency room at 40 days old. The doctors told us they had never seen a child go undiagnosed for so long. When we learned of her heart defect, she was already undergoing an initial surgery to save her life. The doctor who came out to talk to us saw our son, Hugo, and turned to another doctor to say, “Well, at least they’ll still have one child.” I asked what chance Ari had of making it, and was told less than 50 percent—that was the only time throughout the entire ordeal that my husband cried.
As a result of the heart defect, the doctors told us our daughter had suffered a brain seizure about a week before we first brought her to the hospital, leaving her with permanent brain damage. If we had waited even one hour longer to take her in, I don’t think she would have made it. But Ari did survive, and after almost six weeks in the PICU, she got her arterial switch on August 28, 2014. I could have very well been like the two other mothers I wept with when they held their baby girls for the last time on beds next to ours.
Physically, you’d never know what Ari went through, if not for her zipper-like scar. Every year in the US, 40,000 children are born with forms of congenital heart diseases. To put such a diagnosis in perspective, twice as many of our kids die from CHD as from all childhood cancers combined. Because of Ari’s illness, my husband and I founded Op Heart, a nonprofit committed to raising awareness about CHD, helping families and saving babies’ lives. In addition to providing resources and information, our mission is to help doctors create 3-D models of real patients’ hearts using 3-D printing technology with MRI or CT data so they can practice before surgery.
We are so incredibly blessed and grateful to have our thriving baby girl with us today. The effects of the brain damage Ari suffered are still undetermined, but we are hopeful that it won’t stop her from achieving her dreams.
What You Can Learn From Our Experience
Ari’s condition, transposition of the great arteries, could have been detected in utero at the 20-week diagnostic sonogram. Although Ari underwent the recommended prenatal and postnatal care, most sonographers are not trained to scan the heart. Since congenital heart disease can be unpredictable, I recommend every mom-to-be ask and require that their 20-week ultrasound include a scan of baby’s heart.
The transpo also could have been detected at birth with a pulse oximetry test, which uses a simple sensor on baby’s foot to estimate blood flow and oxygen levels. Some states require it as a standard procedure in the hospital, but it’s not one of the universal tests done immediately after birth. (For example, home births with midwives do not require it.) Every woman should ask for a pulse ox test as part of her birth plan.
Lindsey Hunter Lopez, 33, Los Angeles, CA
When my daughter Rosie* was nearly 10 months old, I put her to bed thinking she might have a cold. She was coughing a little bit, and when I searched “croup” on the internet, I read that it’s very common, nothing to be alarmed about. So we set up her humidifier and rocked her to sleep. Rosie normally wakes up at 7 a.m. like clockwork, but when she wasn’t up, I went in to check on her. Her lips were blue and she was struggling to breathe.
My husband, Nate, and I raced her to the emergency room, and it was beyond scary. I cried for hours as doctors tried to figure out what was wrong with her, doing every test possible but not coming up with a solid diagnosis. Eventually they told us it was likely a rare episode of croup that quickly turned serious. They called it “sudden-onset, extreme croup,” and we later learned that since baby airways are so small, it doesn’t take much for them to close up—making croup a potentially deadly condition. They estimated the real onset of the croup was around 4 a.m., and they wouldn't have been able to tell any earlier. So even if we’d brought her in the night before with a cough, we may have been sent home.
Rosie had a collapsed lung and was placed on a ventilator for more than four days, unconscious. Nate and I stayed by her side, taking turns sleeping on a fold-out couch in a nearby room for parents. Mostly we both sat or stood by her hospital bed. After about a week in PICU, she regained consciousness and began to recover. I remember a moment when we gave her Cheerios one night for a snack and she munched away. I felt such relief, I can’t even really express it in words.
My daughter is now 3 years old and hasn’t had another health scare since, but that morning when she didn’t wake up was the worst moment in our lives. Since we moved Rosie into her nursery at 7 months, I slept with her video monitor next to me, and I still do now! When it comes to my kids’ health, I don't take it for granted and their safety is my priority.
What You Can Learn From Our Experience
Inform yourself beyond a simple online search, especially when a young baby seems sick, and be vigilant.
Avoid excess germs the normal ways—washing hands and trying not to cough or sneeze around baby. It’s simple and can prevent real illness.
If you notice a seal-like croup cough or labored breathing of any sort, take baby to the hospital. It could be a life-saving decision.
* Name has been changed
Ashley Jonkman, 31, Albuquerque, NM
On Christmas Eve, when my son Sammy was 8 months old, he had a terrible bout of vomiting and diarrhea and became gray, lethargic and unresponsive. I knew deep down that something was very, very wrong. We rushed to the nearest urgent care that was open where they promptly treated him for a stomach flu. They also said I should stop breastfeeding him because breast milk was “dairy.”
Sammy was okay, but I knew the urgent care diagnosis wasn’t right. He had been fine one moment and then within an hour he seemed on the verge of shock. Plus, no one else in the family got sick, which is curious with a stomach bug that is usually extremely contagious. I also had a bad feeling about the order not to breastfeed, so I searched online and found that it was indeed outdated and harmful advice. Breast milk would rehydrate my son better than anything else, in a time when he desperately needed it! My husband (understandably) wanted me to listen to the medical professionals at urgent care, so their bad information caused a marital disagreement as well when I continued to breastfeed. It was one of the most stressful moments of our son’s life, and it took days for him to recover.
My hunch was that Sammy might have had a bad reaction to soy, but I wasn't sure. I fed him tofu again about a month later and the exact same thing happened. But this time it was worse, and he required an IV in the emergency room, where they told me if this reaction had happened twice with soy, our son was probably allergic. That's when I knew that my instincts had been spot on. I was proud that I knew my kid and had figured out what was happening, but I was still upset by the urgent care experience. Sammy was our first child, and we believed what we were being told by professionals. Not to mention, we were visiting family in another state over the holidays, so we felt vulnerable. It’s incredibly frustrating to get bad—and potentially harmful—advice from a doctor, but I learned that above all, parents should follow their own intuition and do outside research. You are your child’s best advocate, and if something sounds off, investigate.
What You Can Learn From Our Experience
When you start introducing solid foods, do it slowly, feeding baby just one new type of food at a time. That way if an allergic reaction occurs, you’ll know what the culprit is.
You know your child best, and your instincts should be trusted. Find a doctor who listens to your concerns and observations.
Advice from medical professionals isn’t always pure gold—get a second opinion if something feels wrong.
Rachel Walker, 40, Boulder, CO
The night before Silas’s first birthday, he began choking on an apple and started turning blue. He got uncharacteristically quiet and it became clear he wasn’t breathing, so we jumped into action. As I called 911, my husband, Jeff, put Silas flat down on his arm and began to whack his back hard, a technique we learned at infant CPR. (This was one of the only things we did in advance of having kids and, as we learned, was invaluable.)
The paramedics arrived very quickly, and luckily Jeff had already dislodged the apple from Silas’s throat. They were amazing and so kind; they stayed to check him over 100 percent, and I’m so glad I didn’t hesitate to call 911. We declined the ambulance ride to the hospital because Silas was back to normal and we kept an eye on him, taking him to the pediatrician the next day, so we weren’t charged.
Looking back, I saw eating as a terrific activity through which my kids learn independence, and I wanted to empower them. But I believe we didn’t serve small enough apple pieces for Silas, and he also shoved a bunch into his mouth. I wish we’d cut the apple into tinier bites and given him just one or two pieces at a time, replenishing his plate as he finished them. The stage when kids are getting teeth and learning to eat, and therefore learning how to regulate portions, chew them up and swallow them, is relatively short—it’s important to stay very aware at meals during this time, just as you should around water before kids learn how to swim well.
And as far as preparedness goes, the infant CPR we’d learned was key. We chose that class because Jeff and I are both very outdoorsy—we met backcountry skiing and we fell in love over a range of activities like mountain biking and backpacking—and we wanted our kids to get into that adventurous lifestyle. We figured if we were going to do anything to prepare for baby, it might as well be learning to rescue him in case of an emergency.
What You Can Learn From Our Experience
For babies who haven’t mastered eating solids, start out with yogurt or mashed sweet potato with a spoon, and dole out solid foods with a watchful eye.
No parent should hesitate to call 911 for fear of a large bill or of seeming foolish. Even if baby recovers by the time they arrive, it's better you call—the paramedics can still be very helpful.
Infant CPR is a quick and easy class, and knowing it could save your own child or another child in need of help. You can search for a class near you here.