A heart mom is born

By Elin Neugebauer

Elin and Maija

Maija Jean was born on July 2, 2009, after an induction at 40 weeks and 3 days. She weighed 8 pounds, 4 ounces and scored an eight and nine on the Apgar test. It felt like a textbook pregnancy, labor, and delivery with a little Pitocin thrown in. After Maija’s birth I was filled with immense joy and love. Maija made me a mom. From that point forward, I would be a protector, a teacher and a friend.

A nurse took her measurements, weighed her and stamped her feet. I hear a murmur. Usually it is nothing. Don’t worry.

Our first night went smoothly. Bright and early the next morning, her pediatrician checked on her. I hear a murmur. Usually it is nothing, don’t worry. I’m going to schedule a heart ECHO just to make sure.

When the pediatric cardiologist came knocking on the door, I became concerned. This was no longer a textbook birth. I hear a murmur. Usually it is nothing, don’t worry. I am going to have your daughter admitted to the Neonatal Intensive Care Unit (NICU) just to be sure. We’ll run another ECHO in the morning.

After the cardiologist left, I was discharged and my daughter was taken to the NICU. My saving grace was the graciousness the staff blessed upon me by letting me stay one more night as an “invisible patient.” The next morning after the ECHO we were sent home, together. Her discharge included strict instructions to come into the cardiologist’s office first thing in the morning for another ECHO. But I didn’t worry at the time. These things were usually nothing.

I could never have imagined experiencing the kind of emotional pain I felt just four days after giving birth. Numb from the waist down, bursting with love from the waist up. I had just given birth to my daughter. It was the most beautiful and intense moment of my life. I held her close and whispered my love and admiration for her. What I did not know upon the doctor placing her in my arms was that I also became a heart mom.

The murmur was pulmonary valve stenosis. Her lungs weren’t getting enough blood, and she needed surgery. That is when my whole world shifted.

Before Maija’s birth I had no idea she had a Congenital Heart Defect (CHD). Ultrasounds didn’t detect pulmonary valve stenosis, atrial septal defect or right ventricular hypertrophy.

I had skipped the chapters in pregnancy and baby books that covered any type of special need. After her diagnosis, my life changed. I became a stay-at-home mom armed with anti-bacterial lotion, wipes and sprays. Maija sat in a plush cart cover at the store. The job as protector took on a much greater meaning than I was expecting. I quickly became one of those helicopter moms.

Maija

Now, three-and-a-half years later, I am a proud heart mom. And the leash is a little bit looser. Maija is in preschool while I work outside the home, and she enjoys ballet classes throughout the week. We no longer use a cart cover.

Though her surgery at 5 days old to fix the restricted valve was a success, she now has significant pulmonary valve regurgitation. The flow of blood through her valve leaks back into her heart. A similar flow takes place in the hole between her atria. The right ventricular hypertrophy is still a concern. She will need surgery again someday, and even though I will hopefully know in advance, I’m still scared. The idea of your baby, no matter their age, going under anesthesia and having heart surgery is terrifying.

Congenital heart defects affect tens of thousands of babies every year. They are the most common birth defect. As a heart mom, I have a responsibility to share my story – my daughter’s story – with others. She participates in fundraising and awareness events with me, and I am endlessly reading and sharing news with my family and friends. As we enter Congenital Heart Defect Awareness Week, I encourage others to share their stories as well. We can all help our heart babies, young and old, together.

On July 7, 2009, I handed over my baby to the surgeons. It was the single most terrifying moment I have experienced. Her life, and my heart, were in their hands.  We now celebrate our Heart Day every year on July 7. We celebrate her life and her heart. A beautiful beating heart with a special extra whoosh to it.

Maija, 3, takes ballet lessons

Elin

 

Elin Neugebauer is a heart mom to 3-year-old Maija Jean. Elin works at Children’s Hospitals and Clinics of Minnesota as a Health Unit Coordinator and is actively engaged with the community on Twitter. Follow her here

11 thoughts on “A heart mom is born

  1. Patti Remington

    I to was a heart mom. Although I knew in advance of the issue, it was still very scary. My son Steven had heart surgery at 5days old. He had hypoplastic left heart syndrome. After 2 1/2 yr. and 8 surgery’s later we lost my son. One thing I can say about the whole situation is I never met a more caring and hardworking staff in my life. I seen Dr. and surgeons go days without sleep trying to find a way to save my son. I know this for a fact because I was awake with them. Just know they go every inch of an extra mile to make things right. Even though I lost my son, I still suggest to anyone I know who has a sick child to go straight to Childrens in Minneapolis. I know in my heart all stops were taken into saving my child.

  2. Courtney

    My son had heart surgery at 3 days old on Nov. 17, 2011, ad again at 6 months on May 17, 2012, and Children’s Minneapolis. He has Pulmonary Atresia and Tetrology of Fallot. He is a healthy 15 month old now and I am also a very proud heart mom! :-)

  3. Theresa Paduano

    My beautiful 10 yr old Julia was born with pulmonary stenosis also! Your story brought me right back to Nov 27,2002. The only difference being that they took her immediately to the NICU then to the U of M
    For her first surgery. We got to take her home, feeding tube intact approximately 20 days later. She underwent her second surgery at 18 months. She is so full of energy and life. I am thankful for her everyday!

  4. Sarah

    Wow Elin!! This is such a beautiful post honoring your daughter and being proud of your heart mama badge. She is so lucky to have you as a mama!!

  5. Julie Lee

    What a beautiful story. I was to a heart mom. I have my daughter last year. She was admitted to Children’s Hospital and have her first surgery at three months old and second one at 6 months but sadly she didn’t make it. She passed last October at 7 months old.

  6. Erin Wevers

    We were told at 23 weeks along that my Bennett had a Complete AV canal defect and would need surgery in the first 6 months of life. After he was born, an echo showed that it was only a partial AV canal defect (thankfully)- so he basically had no septum between his atria, and his mitral valve was “faulty.” He went to Minneapolis Children’s on June 3, 2011 where they built him an atrial septum and did their best to fix his mitral valve- we only had to stay in the hospital for 6 days! He too will likely need surgery when he is older to fix his valve but is excelling now and is a vibrant 2 year old. Thank you Children’s for taking such good care of our boy! Thank you for your story- it’s nice to hear from other “heart moms.”

  7. Kali

    I just found out i’m a heart mom two weeks ago:-( My son was born with gastroschisis and was in the hospital for two months but has been completely fine ever since. He is now eight and had a high fever I took him in it was 104.9. I prayed they would take me seriously as he had no other symptoms. They found a heart murmur and said no big deal send to make sure EKG. We found out he had mono so we thought ok were good to go. EKG showed definite heart murmur just gonna do a echo to make sure. Lots if people have heart murmur and healthy hearts. Go to echo find out our son was Born with atrial septal defect, partial atrioventricular septal defect and a mitral value cleft. We were shocked he is so healthy and strong. They have no idea how this was missed with all my ultrasound while in utero and being in nicu for month and a half and icu for another half. So were looking at open heart surgery within t the next two to four months. Very scary love to connect with someone whose been here.

  8. Jenny

    My son Braydon was born with a heart defect and he had surgery when he was 5days old. After reading your story it brought back many memories! Braydon just turned one 3 weeks ago and I can still picture everything that happened. Your comment that this was your most terrifying moment, I would have to agree with! I felt so helpless and nothing was in my control! I do have say that I learned so much and I a proud to be a heart mom as well! Your daughter is beautiful! I am so happy that things have been working out for you!

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