June 16 - Dear Nicholas Sparks (Guest Blogger Hope Clyde)

Dear Nicholas Sparks,

I wanted to write you a letter about something that a lot of people don't talk about. Today I wanted to share with you how I felt when I got pregnant after having a baby with Congenital Diaphragmatic Hernia, CDH. I hope you have taken a few minutes to research CDH and know how seriously ill these babies are.

When my son was born with CDH, it was extremely traumatic for our family. We had a 2 year old daughter when we had Tyler. When he was born, the medical interventions used to keep him alive were very hard for us to see him go through. IVs, PICC lines, feeding tubes, ventilators, highly advanced machines keeping my newborn alive. The sounds of the ventilator and monitors, the smell of the anti biotics, the feel of him swollen up on meds to save his life, all of this was very hard for a mother to see.

Well, we got to bring Tyler home. He survived! He was on oxygen for 11 months. Constant doctor visits, loads of medicines, carrying around all the machines to keep him alive. That first year was the hardest year of my life. I weighed his equipment and car seat one day, without Tyler, his "stuff" weighed 75 pounds. Nothing was easy. It was awful but I was so grateful that my son lived! 

As the years went by, we considered having more children but I just couldn't do it. All I could imagine was having another "sick" baby! I couldn't do it again. I barely survived it once! Well, one day, 4 years later, my period was late. How could this happen? We were preventing another pregnancy from happening! I COULD NOT HANDLE THIS. I went in to the the doctor for blood work and it confirmed my pregnancy. 

How was I going to get through this? My mind was spinning. I couldn't talk. I couldn't walk. I couldn't BREATHE! What if I have another baby with CDH? It is possible! I was having flashbacks of our NICU stay, all the medicines, the surgeries, the feeding issues, traveling across the state for doctor appointments, the financial stress, the stress on my body, the toll it took on my family........ How will I survive?

Every day, every minute, I was in total panic. Early ultra sounds showed no sign of CDH in this baby, but CDH can be late presenting. The fear and horror of another baby with CDH was relentless. I vividly remember that I was 6 months into my pregnancy before I found peace. SIX MONTHS! Somehow, I came to peace with the fact that I can't change it if this child had CDH, but I could react different than I was. I had to.

The good news is that we had a healthy baby girl with no problems at all. That pregnancy was such a dark time for me. I was completely out of control with fear and anxiety. We ended up having one more daughter after that pregnancy. That brings our total to 3 girls and 1 boy.

CDH rocked my life and continues to do so when I least expect it. Please help me raise awareness of CDH. With your help, we can change the world. 

Thank you for your time, 

Hope Clyde

Mother of Tyler Clyde, 13 year old CDH survivor.

May 5 - Dear Nicholas Sparks (Guest Blogger Hope Clyde)

Dear Nicholas Sparks,

I want to share with you a story about how our journey with Congenital Diaphragmatic Hernia started. The contents in this letter changed my life forever.

It was Sept. 28, 2001. The day before our daughter's 2nd birthday. We had just done a follow up ultra sound on our second pregnancy. I was 22 weeks along. I got a call from our doctor and long time friend. He said he needed to see me and my husband today about the results of our ultra sound. I thought it was unusual, but didn't give it more thought.

We went in to see our beloved doctor and I could instantly feel a heaviness in his behavior that I had not experienced before. He said words to us that will forever change our lives. He said, "I hate to give this news to anyone, but especially someone I like. Your baby didn't develop right. There are some problems and you will need to go to Salt Lake City to see a high risk pregnancy specialist...." Salt Lake City, UT is 320 miles from our town, a 4 1/2 hour drive. I thought our doctor meant that our next appointment in a month would be in Salt Lake. "No, Hope. You have an appointment on Monday at 9am". This was Friday afternoon! That's when I realized our lives would never be the same.

Monday morning we entered into this high risk pregnancy specialist's office and my breath was taken away instantly. There were pictures of "sick" babies on all the walls. Why was I here? There must be some mistake. There was no mistake. We were given the awful news that our unborn child has a birth defect called Congenital Diaphragmatic Hernia, or CDH. The specialist went through the statistics with us:

*this happens 1/2,500 births

*there's only a 50% chance of survival

*IF the baby survives, they will need life saving surgery at about 1 week old

*expect a 4-6 month stay in the NICU

*expect a lifetime of feeding problems, lung problems and possibly life threatening medical problems

He went on and on. He sounded like Charlie Brown's teacher mumbling. I was frantically taking notes in my notebook that our doctor suggested we take. We were writing down medical terms that the specialist had to spell out for us. He did an ultra sound in his office and explained everything to us. He asked us about terminating the pregnancy. We couldn't even think of terminating this pregnancy but to say we were overwhelmed is an understatement. We made plans for our next appointment in a month and figured out when we would need to move to Salt Lake to have the baby.

My life now had 2 parts: before CDH and after CDH. 

As we left his office that day, he said to us, "go home and Google CHERUBS, as in angels, CHERUBS. Write it down. That's where you will want to get any and all information CDH related. CHERUBS is at the top of their game. They are the best. You wont need to go anywhere else for information." We are so grateful that he sent us to CHERUBS. We were never alone because of CHERUBS.

The reason I am writing you this letter and others in the future is in hopes that you can help me along with CHERUBS to raise awareness of CDH. The birth defect that rocked my world 14 years ago continues to devastate families to this day. Please help us raise awareness so we can raise money to continue searching for a cause.

CDH didn't take my son's life YET, but he will never be "out of the woods".

Thank you for your time,

Hope Clyde

Mother of Tyler Clyde, 13 year old CDH survivor.

February 1 - Dear Nicholas Sparks (Guest Blogger Hope Clyde)

Dear Nicholas Sparks, 

I'm writing you this letter about how my relationship with God has changed because of my son being diagnosed with Congenital Diaphragmatic Hernia or CDH. Please read this with an open heart. What I am about to write is extremely personal and something I don't share openly. Also, please know that this is MY experience. Many others have a completely different experience with faith and hard times. This is just what I went through.

I'm a member of The Church of Jesus Christ of Latter-Day Saints, or Mormons as most people know us. Today is Sunday, our Sabbath day. It causes a lot of reflection on lessons I've learned in the past and life changing experiences I have been through.

My family, we pray. We pray regularly. We are very faithful and believe in praying for things that we are grateful for and things we need help with. When our unborn child was diagnosed with CDH and I started researching everything I could get my hands on, the 50% chance of survival statistic was pretty hard to deal with. IF our child survived birth and was among the 50% that lived, he would possibly live with a lifetime of feeding therapy, occupational therapy, speech therapy.... I think you get the idea. We were fine with all of that, we just wanted our baby to live.

So, our prayers started out by praying to our Heavenly Father that our child would live so we would have an opportunity to raise him. We prayed with all of our hearts and souls. We prayed, with faith, like we have never prayed before. Pouring our hearts out to our loving Heavenly Father.

On January 28, 2002, our son was 3 days old and we got the horrifying news that he was extremely critical. We were told that his condition was non-survivable. How could this be? We have been doing everything we are supposed to! How would He take our son away from us? This is when there was a shift. Our prayers changed. We started praying that no matter what our Heavenly Father's plan for Tyler was, life or death, that He would help us through it. "Just give me the strength and direction to get through this situation and all those in the future.... I TRUST THEE."

Putting ALL of my faith in God is nothing I had ever done. Letting go of MY control and letting Him take over. It was not easy, I would be lying if I said it was. In fact, it was the hardest thing I have ever done in my entire life, to date, but I knew if I would put all of my faith in Him, He would help me through.

Well, Tyler survived day 3, he survived day 4 and on day 5 was his surgery to repair his diaphragm and give him any chance of life. As I walked away from my precious newborn son, I whispered to Tyler, "son, follow Heavenly Father, He will show you the way...." I was speaking those words to my baby, but very much saying them to myself. I was at peace. I knew that things would be fine, whether it be MY way or HIS way, Heavenly Father would teach me the way.

I'm happy to say that Tyler survived his surgery on day 5, he survived another life saving diaphragm repair at 4 1/2 months and somehow has survived 13 years. We still put all of our faith in our Heavenly Father and know that He will guide us, take care of us and carry us when we can not walk another step. I'm grateful that I was able to learn that, by faith, all those years ago.

Thank you for taking the time to read my letter. I hope it has touched you in some way.

Hope Clyde

Mom of Tyler Clyde, medical miracle and pretty cool kid!

January 30 - Dear Nicholas Sparks (Guest Blogger Hope Clyde)

Dear Nicholas Sparks,

Today is January 30th, 2015. I wanted to share an experience I had yesterday, with you.

I have a son named Tyler. He just turned 13 and he was born with Congenital Diaphragmatic Hernia (CDH). It's a condition that  we must always stay on top of. We are part of the "lucky" 50% that our child survived.

We went in this week for his annual check up with our doctor. Having a child with CDH, you learn really fast that nothing is "normal". At his check up, our doctor checked his spine for scoliosis (very common for kids with CDH), we reviewed his reflux meds, ordered some tests and discussed having a miracle sit before us.

Tyler got a chest x-Ray to make sure his large Goretex patch that was made as an artificial diaphragm when he was 5 days old, is still doing its job at being a barrier to the organs between his chest cavity and his abdomen. This is extremely important. If his diaphragm tears, Tyler can go in to respiratory failure and die. It's a reality that scares me every single day of my life. I have no reason to think there is a problem with his diaphragm right now, but we always do chest x-Rays to make sure!

Another thing we will always have to keep an eye on is pulmonary hypertension. Pulmonary hypertension is an often fatal complication of CDH. Our doctor scheduled an echocardiogram to check for signs of pulmonary hypertension.

We went to our local hospital to do the echo yesterday. We got checked in, went back, everything was going fine. Tyler took his shirt off and laid on the table. It's been quite a few years since he's had an echo, so I was explaining everything that was happening. He was pretty anxious just because he didn't know what to expect.

The tech was going along as expected but then he called in the radiologist. No biggie, I thought. They started speaking in medical terms I didn't understand. I know a lot of medical lingo, it comes with the territory, but they were talking about imagery. It felt very secretive to me. I hated it. I didn't know if they were seeing something concerning or it was a "show and tell" type of situation. I know Tyler's insides don't look like most people's, so I was hoping they were just curious.

They kept going..... and going..... and going......

I was getting pretty nervous. The what if's started running through my head. What if they were seeing something suspicious? What if my 13 year old son was showing signs of pulmonary hypertension? This kills people daily, you know? Like in a vortex, my mind went spinning in circles. Panic was creeping up on me. I could feel my face was flushed, my heart racing, I was getting restless. Tyler has come so far, this setback would be devastating.

Well, that 20 minute echo turned into a 55 minute torture session for this mom.  They finally ended and I asked if they could tell me anything about what they saw. The reply I got was, "I wouldn't be too concerned". Really? Then why not just tell me you're just excited to see something different? I was so frustrated but relieved. I feel like we have dodged a bullet, for now.

Tyler will never be "out of the woods". We will always have these situations to deal with. Forever. I'm so grateful to be dealing with scary echoes instead of death anniversaries.

This is the reality of the long term effects that CDH has on a family. Thanks for your time.

Sincerely,
Hope Clyde