Penelope's Story - Congenital Diaphragmatic Hernia (CDH)

It has taken me awhile to write Penelope's story. How do you adequately describe the worst moment of your life. The moment that changed you forever. The moment that caused so many tears and sleepless nights. The moment that put you through months of fighting. The moment that ultimately was the best thing to ever happen to you. How do you put that all into words? Well here it goes...

In December of 2017, we were so excited to find out we were expecting our third child. At the time we had Emma who was four and Claire was one and a half. They were so excited to be big sisters. We were going to all our regular OB appointments. When the time came we decided to have the quad screen done. Just like with the other two pregnancies we had decided the more information we had the better. Nothing found would ever change our minds to continue the pregnancy we just wanted to know. A couple of weeks later I received a call that the quad screen had come back abnormal. The marker for Down syndrome was flagged. We would need to see a high risk doctor and genetic counselor to verify. The appointment was scheduled for Friday April 6th at 10:00AM, three days after the phone call. During those three days I did as much research as I could about Down Syndrome. I wanted to know everything I could to give our baby the best possible life.

The day of the appointment came. We met with the genetic counselor. She went through the quad-screen results and explained how the test is not 100% accurate. We went through our family history. With all of these factors she indicated we had a very low possibility of having a baby with Down Syndrome. We then went into the ultrasound. The ultrasound technician chatted with us the whole time and made us feel very comfortable. At this time we found out we were having OUR THIRD BABY GIRL! We were so elated!! When the tech had all the information she needed, she went to consult with the doctor. They both came back in about ten minutes later. The doctor sat down and said "Your baby is very sick, her stomach is in her chest. She has what is called a Congenital Diaphragmatic Hernia. This will compromise her lungs and give her a 10% chance of surviving. Typical in theses types of situations we recommend termination”. Jared and I both looked at each other and said “IT IS NOT AN OPTION FOR US". We were given the choice to have an amniocentesis done. We decided to have the procedure done because we wanted all the information possible. We were then given a pamphlet about CDH and sent on our way with no other direction. I cried and researched the whole 3 hour car ride home. The weekend was spent in the same way.

Come Monday morning, I was done crying I was in fight mode. I had joined a few CDH support groups and read every post and comment. To say I was consumed would be an understatement. Through these means we found Dr Kays. I knew in my heart this was our answer. We needed have him as our surgeon by any means necessary. It is so crazy how in the months to follow things just keep falling into place at exactly the right time. It was definitely God's plan and proof he was guiding us in the right direction to save our baby girl's life. That initial call from Joy Perkins was the first moment of hope for us. Our little Penelope was finally a baby and not just a diagnosis. It was going to be a long hard fight but she had a chance! During our consult with Dr Kays we were told Penelope's case was very severe. She had 30% liver up and 18% lung to head ratio. She only had about 10% of her left diaphragm. She was given a 90% chance of survival with 95% chance of needing ECMO.

Penelope June Geigle was born August 14th 2018 weighing 6lbs 12oz. She was placed on ECMO at 1 hour old. She spent 22 days on ECMO and was intubated for 31 days. Although being heavily sedated she hardly slept. She needed to always be in the know as to what was going on. We spent 122 days in the hospital with a readmission due to complications from SVC stenosis. During her hospitalization Penelope had her CDH repair, a gastronomy tube placed and Nissen fundoplication as well as a cath procedure to place a stent in her SVC.

Our little Nellie Bellie is now 1 year old and doing fantastic. She is in the 3rd percentile for her weight. She is still on oxygen due to pulmonary hypertension. She still has her feeding tube which we only use at night. She eats solid foods and does very well. We see therapists for OT, PT and speech services. They are all pleased with her progress and don't think she will need services past two years old. She amazes us everyday with her strength and resilience after everything she has been through. She is such a happy girl and noisy as ever.

Our journey with Penelope was and will always be in God's hands. I truly believe everything happens for a reason. God guided us to Dr Kays and his incredible team. There is no way to say thank for all they do. They give families hope and make this world a better place. The Ronald McDonald House was a God sent. The staff truly care about you and your child and become like family. Our Strong for Penelope supporters and the CDH community have shown us so much love over this past year it is incredibly humbling. Without their support we would not have been able to relocate the 1,861 miles away from home with half of our family in St. Petersburg Florida and the other half in Pierre South Dakota.

Tiny Hero is an amazing organization. They have helped our family during times of need on multiple occasions. Always in God's plan exactly when we needed it. We could not thank them enough for all they do. Back to the question at the beginning. How do you describe the best and worst moment of your life? You can't and never will... All you can do is pray your story will bring hope to another family in a similar situation. If you you would like to follow Penelope's story like her Facebook page, Strong for Penelope.