Not the Pregnancy We Planned: Navigating a Rare Diagnosis at Children’s Hospital of Wisconsin

Today we are featuring a guest post from a Milwaukee area mom, brought to you by Children’s Hospital of Wisconsin and their Fetal Concerns Center, an amazing resource for expectant parents who find themselves faced with a pregnancy experience they never expected. 

children's hospital of wisconsin

Like many new parents, my husband Rick and I were so excited to be pregnant with our first child – and having a baby with a birth defect was the farthest thing from our minds. My pregnancy was sailing along smoothly until our 20-week ultrasound. We were excited to learn our child was a girl – we named her Madelyn – but our doctor found a spot on the baby’s lung. It was a concern, but nothing too alarming. Our doctor kept monitoring the spot, and at first, it didn’t grow much. Then at 28 weeks, everything changed. We were referred to the Fetal Concerns Center at Children’s Hospital of Wisconsin with a suspected diagnosis of congenital pulmonary airway malformation (CPAM), a rare birth defect in which a mass of abnormal tissue grows in the lung.

Within days, we were at the Fetal Concerns Center, where we met with a team of doctors who made us feel cared for from the very beginning. We learned that Madelyn had a particularly severe form of the disease. We were scared, but we also felt reassured by the staff who were really good at explaining exactly what they were doing and why they were doing it. Since I’m an analytical chemist by training, I wanted to understand everything that was happening to our baby. Our maternal-fetal medicine specialist, Dr. Meredith Cruz, could tell I was anxious. She understood what I needed and even though I asked so many questions, she was always patient.

A difficult time, an amazing team

I had several ultrasounds each week to monitor the baby’s health, as the growth in Madelyn’s lung was beginning to crowd her heart. By 35 weeks, the cyst had grown even larger and I was admitted to Froedtert Hospital. The cyst had shifted her heart to the other side of her chest and her other healthy lung was compressed – and on top of it all, she was breech. It was a really scary time, but my care team, including nurse coordinator Marcia Koenig, RN, made it okay. When you are dealing with a baby with health problems, the last thing you want to do is have to explain your situation over and over to your providers. The way the Fetal Concerns Center is organized is fantastic and communication is seamless. I never had to explain the baby’s condition to any of the people who cared for me – they were all on the same page and ready to support us.

Having Marcia as our nurse coordinator made all the difference. She focused on my well-being and arranged appointments so we could get all my care in one place at one time. I never worried I was bothering Marcia, because she told me, “It’s my job to help you and answer all your questions.” She made me feel cared for not just physically, but emotionally.

Side-by-side delivery and NICU care

When it came time for delivery by C-section, it was all hands on deck – there were 15 people in the operating room just for the baby. Amazingly, Madelyn was able to breathe on her own at birth, but her condition was still serious. Dr. Amy Wagner performed surgery to remove the upper lobe of Madelyn’s left lung when she was five days old – thorascopically, so no large incisions were needed. Then Madelyn began her recovery in the Children’s NICU, just steps away from the birthing center at Froedtert where I was recovering from my C-section.

The Children’s NICU nurses there were amazing – so calm and thorough. Once I had recovered, Rick and I stayed right in Madelyn’s private room in the NICU. We loved being so close to her, and the NICU nurses were concerned about me, too. They would make sure I was eating, sleeping and not on my feet too much.

congenital pulmonary airway malformation

An amazing outcome

Madelyn made a full recovery and is a happy, relaxed and healthy baby. Her lower lung lobe has expanded to make up for the loss of the upper and she’s got so much fight and spunk to her. She’s also a favorite at daycare – she’s just the smiliest little girl.

Our experience with Madelyn is not what having a first child is “supposed to be,” but we feel lucky to live close to Children’s and to have received care at the Fetal Concerns Center. If we hadn’t had Children’s, I don’t know how things would have turned out. The confidence of our doctors put us at ease. In their minds, there was never any doubt that Madelyn would be okay.

About the Author: Stephanie Herian lives with her husband, daughter and two dogs in Port Washington.

The Fetal Concerns Center is the only program of its type in Wisconsin and one of only a small number across the country. For more than 15 years, the center has served the special needs of women and families, coordinating services for more than 500 families across the United States each year. The center operates in close collaboration with Froedtert & The Medical College of Wisconsin to deliver high-quality, comprehensive fetal care. Our providers are employed by the Medical College of Wisconsin.

 

 

 

 

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