What nurses taught this mother

Ten years ago this month, I finally had a positive pregnancy test after more than a year of trying. My husband, Jim, and I were never happier. This elation lasted four months, peaking on December 30, 2003—a day we’ll never forget. The happiest moment of our lives occurred in a dark ultrasound room where we saw our baby boy for the first time. I was 23 weeks pregnant. That joy lasted about two hours, just long enough for the sonogram to end and my appointment with the midwife to begin.

Our baby boy, Liam, was missing half of his heart.

Liam’s heart has 10 different defects, seven of which were each independently lethal without immediate surgery. The combination of them made his survival questionable at best. I learned as much as I could from Liam’s tight-lipped cardiologist. Then we all waited to see if Liam and his heart could even survive outside of my body.

While I worried incessantly about Liam, the loving nurses in the maternity ward took care of me during my long labor and during and after my brutal emergency C-section. They were beyond fabulous, entirely and rightly focused on my health. They urged me to take care of myself, but I wasn’t capable of thinking about myself. I only wanted to know about Liam.

The first nurse who seemed to embrace Liam, literally, was the Flight for Life nurse who came all the way from Los Angeles to Denver to take our son back with her in search of a new heart. While Jim and I were terrified, she was buoyant.

Once we arrived in L.A. following Liam, it was like we’d gone to heaven. In the CTICU, we met the most talented nurses who had been taking care of babies like Liam for years. They weren’t afraid of our son or his scary half-heart. They were ready for us and any questions we asked.

Ultimately, Liam didn’t have a heart transplant. He was far too sick to wait the eight-month minimum for a match. Liam would die without surgery. The wise nurses never told us that, or that it was not normal for a newborn baby, even one in the CTICU, to have four or five ultrasounds of his vital organs in one day. They never lied to us, but they never volunteered information we weren’t ready to hear. If they didn’t know the answer to our most recent question, they made sure to find someone who did. They protected all three of us, and when we needed it, they imparted their gentle wisdom.

Then, Liam had his surgery, the modified Norwood surgery. That morning, the surgeon told us Liam had a 23 percent chance of dying in the OR, but a 100 percent chance of dying by the end of the week without the surgery. This is where motherhood led me the morning after my first Mother’s Day.

Liam’s first surgery was so violent and urgent that his heart swelled up too big to fit inside his tiny ribs. His chest remained open like a window in a storm for days. And our nurses, who stood sentry and who were fun and sweet and encouraging for a full week before Liam was torn apart, were now entirely focused on keeping him together.

Then, in the long days of recovery, as line by line and tube by tube dropped away, Liam eased minutes and inches away from death. During that long march toward living, Liam’s nurses became the best teachers I’ve ever had. They taught Jim and me:

• The routine of the doctors’ rounds, and how to be present and ask questions
• The anatomy of Liam’s heart, pre-op and post-op
• How to affix an oxygen cannula on a squirming baby
• How to do the baby burrito swaddle in a receiving blanket
• How to lift Liam as his sternum reset itself (for the first of what would be five times)
• How to know when to call the doctor and when to call the ambulance
• That Jim and I could do this. That we could take this shattered doll home to be our baby and raise him to be a real boy.
• To see what’s in front of us and to trust our instincts.
• How to hope and to believe in ourselves. They made us the parents we would become.

Liam has endured general anesthesia 13 times. He has had heart surgeons and cath doctors in his body 12 times. He crashed during labor, bled out after a cath and teetered on the precipice of complete organ failure, and escaped by a matter of minutes from fatal sepsis. Liam bears the scars of 21 chest tubes, six passes through the skin above his sternum, five clashes with the bone saw to spread his sternum, cut downs for lines on all of his limbs and his neck. He will be cut again for a pacemaker before he ever gets a driver’s license. My son is more scarred than anyone I know, and yet he is alive. Liam is now nine years old and thriving.

Nurses saved my child. Nurses saved my sanity. Nurses are the best educators and the fiercest lions on earth. They stand between the gates of life and death and do their best to keep those who want to stay here on this side with the people who love them. Who else could stand 12 hours at a time, guarding against death, and risk having one’s own heart broken, while wearing a smile? Only a nurse.

Amanda Rose Adams is the author of Heart Warriors: A Family Faces Congenital Heart Disease. She is the founder of the international nonprofit organization Hypoplastic Right Hearts and the president of the Children’s Heart Foundation, Colorado Chapter. Adams and her husband have two children, nine-year-old Liam, who was born with without his right ventricle or a functional aorta, and eight-year-old Moira, who is an awesome sister. You can contact Adams through her website, amandaroseadams.com.