As a guild, our mission is to raise money for Seattle Children’s Hospital. But we are also a group of parents, friends and family – all touched in some way by CDH. And as such, we seek to raise awareness of this life-threatening birth defect so that we may inspire hope and empowerment for those that follow us in this journey.
To help raise awareness, we will host a series of guest posts to share our stories. These posts will come from mothers, fathers, family members, survivors and caretakers.
I used to be a 31-year-old educated woman who did not really know what a diaphragm was for. I didn’t even know how to spell it. That all changed on December 13, 2011.
My husband and I were expecting our first child. For the third time. After two miscarriages, we had made it to 20 weeks and were thrilled to finally exhale. We went to our 20 week anatomy screening ultrasound hoping to hear that we were having a healthy baby boy (we just knew it was a boy). Our first shock came when the tech announced “It’s a GIRL!” But then she spent a long time, without explanation, capturing images of the baby’s thorax. We exchanged glances, but mostly just joked about having to look into boarding school when she’s a teenager in case she’s anything like Mommy. We left the appointment feeling uneasy, though neither of us really discussed the feeling. We went to buy a few girl clothes to celebrate and called, texted and emailed friends and family. That evening, my doctor called. I don’t remember exactly how the conversation went. I sort of remember it in pieces: congenital diaphragmatic hernia… hole in the diaphragm… intestines, stomach, liver in her chest cavity… heart looks functionally fine but has a small hole… surgery after birth… appointment tomorrow with maternal fetal medicine.
We went the next day to a specialist for genetic counseling, testing, amniocentesis, fetal echocardiogram and further ultrasound. The doctor couldn’t tell us Kate’s exact chances, just that she was on the severe end of a diagnosis with a 50% survival rate. He started each sentence with “If you decide to continue the pregnancy…” It was a shocking thing to hear over and over again as they gave us the prognosis of this little baby we longed for so much. We spent the next three weeks (over Christmas) researching, discussing, meeting with doctors and crying. A lot of crying. I went to bed and woke up crying nearly every day. With my hand on my stomach, I would just cry for my sweet girl.
By 24 weeks, we decided that we had to give this little girl a chance. And that’s when we gave her a name: Kate. I grew closer to Kate over those few weeks, letting her tell me what she wanted. That she wanted to fight and that she’d try as hard as she could. And we just had to give her the opportunity to do that and hope that “as hard as she could” was hard enough. From the moment we named her, our focus shifted. We distanced ourselves farther from grieving the loss of a “normal” beginning for Kate and focused on preparing ourselves for what was to come and trying to remain positive. We decided to deliver at UWMC, we toured Seattle Children’s and visited the NICU. We had a baby shower. Our parents put their summers on hold so that they could come out to stay with us. We had a plan, and having that plan gave us the confidence to believe she would survive. There was still sadness, but I mostly remember the second half of my pregnancy being filled with hope. We could very clearly see this little girl and her strength – she was feisty from the very beginning. But it’s not always in their control. Each of these babies have enormous strength, but they are up against so much and they don’t all make it. So, though we hoped, there were definitely still times of arresting panic. Fear for what her future held. Would she make it out of the delivery room? Would she make it long enough to transfer to Children’s? Would she survive the 2-mile ride there? Would she need ECMO? Would she make it through repair surgery? Would she come home? What would her life look like if she did? The list of long-term effects repeated over and over in our heads and we had to keep reminding ourselves of the plan. And we had to hold out hope.
On April 26, 2012, the day came to deliver her and we were excited, as new parents would be. And we were nervous, as new parents would be. But, unlike most new parents, I brought an outfit to the hospital, not to take my daughter home in, but to dress her in if I was only given one chance to hold her. I tried not to think down that path too much, but I needed to be prepared. To have control over those precious moments with her if they were to be the only ones we had.
But she did make it out of the delivery room. And she made it to Children’s. And she made it through surgery – with a very large patch making up for an almost complete lack of diaphragm on her left side. And she did need ECMO, though only for three and a half days. We were in the hospital for 171 days; almost six months. We had some very rocky times. Times when I had to ask the doctors if my baby was going to make it. And times when they didn’t know. There were times when she wasn’t getting better and no one knew why. And there were times when even the nurses cried with us, because we all felt hopeless and helpless. At one point, we were offered a special service of professional pictures of us with Kate and imprints of her little thumb on a necklace… only later did I realize that those things were being offered because the team was very worried that she wouldn’t survive. The “rollercoaster” metaphor is often used with CDH babies and it’s very real – a few good days were often followed by days, nights and weeks of worry that she’d never turn the corner. Those were the hardest 171 days of my life. But finally Kate was discharged on October 12, 2012, a few weeks after her second major surgery (gastrostomy, fundoplication and appendectomy). We got to bring our baby home!
But she did make it out of the delivery room. And she made it to Children’s. And she made it through surgery – with a very large patch making up for an almost complete lack of diaphragm on her left side. And she did need ECMO, though only for three and a half days. We were in the hospital for 171 days; almost six months. We had some very rocky times. Times when I had to ask the doctors if my baby was going to make it. And times when they didn’t know. There were times when she wasn’t getting better and no one knew why. And there were times when even the nurses cried with us, because we all felt hopeless and helpless. Those were the hardest 171 days of my life. Finally Kate was discharged on October 12, 2012, a few weeks after her second surgery (gastrostomy, fundoplication and appendectomy). We got to bring our baby home!
Coming home was hard too. Although it’s what we longed for, coming home with a six-month-old on oxygen, a feeding tube and a sat monitor is nothing like coming home with a newborn. But soon we lost the monitor and then the oxygen just around her first birthday. Kate’s development has been a slower than a typical child’s. We still struggle with feeding and weight gain. She’s still about 99% tube fed. Kate’s doctor appointments have become more and more sporadic, but she continues to be closely monitored by pulmonary, surgery, cardiology, audiology, neurodevelopment and occupational/physical therapy. All of that said, if you saw her today, throwing a tantrum when it’s time to leave the park, you would have no idea what she’s overcome.
Kate is a happy, strong, confident, loving, beautiful and hilarious little two-and-a-half-year-old. We’re so very lucky and blessed that she made it through so much. We’re so thankful for the healing journey at Seattle Children’s Hospital. Our time there was the hardest, but also the most rewarding, time of our lives. They healed our little girl and taught us how to care for her. We will be forever grateful for the doctors, nurses, techs and staff there. So that’s why we are a part of the CDH Warriors of the Pacific Northwest Guild – to give back and show our gratitude by supporting those who’s journey follows ours. And through Kate’s strength, we aspire to give hope to others.
Jana Schneider | Guild Member & Marketing / Media Coordinator