December 20 - Dear Nicholas Sparks

Dear Mr. Sparks,

Have you seen all the photos in the news about grieving parents incorporating their children's memories into photos? I've become obsessed with them. I think they are beautiful.

I recently moved and I've been looking at photos of Shane that i haven't looked at in years. It's been emotionally draining. Tonight I just felt pulled to do this photo. I have 10000 other things to do before Christmas but I couldn't shake this so I gave in and did it.

I don't have a little family (no husband or other kids - going through a divorce) so what I do have for a family and where my son's memory is remembered the most is at CHERUBS. This is our office hallway. The tree is decorated with my personal ornaments, including Shane's. This is where his spirit lives on for me. This photo is a way to include him in my current life and raise awareness. It is symbolic. It's not the best graphic quality... I have never done this before.

I have a very dear friend helping with a project similar to this (his will be much better than mine! He's an amazing photographer) and I've spent months talking to him about a way to do this for all our grieving parents. We are working on ideas. 

Christmas is a wonderful time of year for me, even though I lost my son.  I still believe in Santa and my faith is strong and I know I will see my son again because of His son. 

If you're not familiar with  Shane's story, you can go to Shane's site at http://www.shane-torrence.com/

I'm behind on posting letters but they are coming.  We will finish this year.  Between the divorce, moving more, a death in the family and all the charity work... I don't have time to myself lately to do anything, including write letters.  I write them out in my head, I have notes everywhere... they will make it here before the end of the year.   I am not a quitter.

From my family and from the charity to your family... Merry Christmas.

Sincerely,

Dawn M. Torrence

Emotionally drained grieving CDH mom

October 17 - Dear Nicholas Sparks

Dear Mr. Sparks,

Yesterday we posted a press release to help raise more CDH Awareness:

RALEIGH, N.C., Oct. 16. 2015 /PRNewswire/ -- After 10 months of writing letters to Nicholas Sparks, CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support, turns to the author seeking his help. They want him to feature congenital diaphragmatic hernia (CDH) in one of his upcoming novels.

CDH occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year) and has a 50% mortality rate. The cause of CDH is not yet known. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.

"Our CDH stories have heartache and sorrow, joy and hope, life and passing," says president and founder Dawn Williamson. "We have the perfect opportunity to increase CDH awareness and a guaranteed following of Mr. Sparks to insure the novel's success."

Only one thing is missing. Mr. Nicholas Sparks, who is touring with his new romantic-thriller, "See Me," needs to agree to include CDH in a book. So far, there is no indication whether or not Mr. Sparks will accept the challenge.

"We have all the source material he would need," says the CHERUBS office manager Jason Miller. "There are literally thousands of both survivor and non-survivor stories from which Sparks can glean."

Williamson extends an invitation to Sparks for the upcoming CHERUBS Masquerading Angels Ball at TPC Wakefield Plantation in North Raleigh. "A masquerade ball, singles mingling, pretty dresses- this has everything the top romance writer needs to fuel a story," smiles Williamson, who happens to be single herself.  "Mr. Sparks is a very handsome man.  The dashing writer arriving at the masquerade ball to be the date of the charity leader who wrote to him daily seeking his help in memory of her son and to help other children would make a very romantic storyline, wouldn't it?" teased Williamson.

Williamson has had the opportunity to meet Sparks twice so far, including at an event in Chapel Hill this week.  "I was able to talk to him about including CDH in one of his future books.  He didn't say yes.  But he didn't say no.  I know he has a good heart for children because he has his own foundation.  Many of his characters do die in his novels so it's not far-fetched to ask him to make the cause of death CDH to help us help these children.  More awareness equals more research funding for these babies.  They need his voice."

"The only mission at CHERUBS is to help families affected by CDH by searching for the cause, prevention and best treatments of Congenital Diaphragmatic through research and awareness while supporting the CDH community.  We focus on the whole CDH community, not personal missions," says Miller.

http://www.savethecherubs.org

Video - https://www.youtube.com/watch?v=2ToNjVIVniw

It reached over 6500 newspapers, stations and web sites in just 2 days.  Isn't that incredible?   Yet, people are not reaching out to us to learn more.  The phone isn't ringing off the hook with reporters wanting to learn about CDH.  

Awareness is being raised.  But our voice isn't loud enough.  We need you.

Sincerely,
Dawn M. Torrence Williamson
CHERUBS President

October 16 - Dear Nicholas Sparks (Guest Blogger Brigette Tophen)

Dear Mr. Sparks, 

I am writing this letter to share our story with our daughter's CDH in the hope that you will be able to provide awareness through your writings.  CDH occurs on the same average as Spina Bifida and Cystic Fibrosis yet there is nowhere near the research alloted to CDH as to the two others.  This is our story.

Our daughter was born in June 1990 in Toronto, Ontario, Canada.  Within a minute of her birth, she started turning blue.  My husband was witness to this but I did not see.  She was rushed away with the nurse performing mouth to mouth.  To understand the severity of her care you need to know that I delivered on the 1st floor of the hospital and the NICU was on the 4th floor.  To this day, I do not know how the nurse got there.  I do know that she lost close to 4 minutes of oxygen.

It would be two or more hours before my husband and I were to learn of her condition.  We learned that she was born with Congenital Diaphtagmatic Hernia on the left side.  Her stomach, intestines and part of her bowel were in the cavity of her left lung.  Her left lung was the size of a pea pod and her heart was pushed to the right side of her chest.  

We had named our daughter Jessica and now the doctors were telling us that she had only a 50/50 chance of survival.  As hard as everthing was to hear, it made less sense to me as her mother as she weighed 8lb, 9oz.  We were told that if I had not had her at the hospital were she was born, she would have died.  God was with us this day.

Jessica was transferred to the Hospital for Sick Children in Toronto where she was operated on when she was 44hrs old.  She spent 22 days in hospital snd then came home with no medical intervention required.  I did  not realise then just how lucky she was to survive, but I do now. 

There was no support groups available then and Jessica was 23 when I found Cherubs.  It helped to know we were not alone.  It was disconcerting to know that in all the years since her birth that no further medical strides had been made.  Parents should not still be given 50/50% odds for their child's survival in the 21st century.  More research is needed and through your writing, you have the medium in which to help.  

Will you please help? 

Thank you from Jessica and our family for your consideration.

Sincerely,
Brigette Tophen

October 14 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today is a personal letter from me.  

I've been separated from my second husband for six months.  Today, we settled the divorce.  It was contentious, it was a horrid marriage... I hate to speak ill of others so that is all that I will say.

Why am I sharing this with you?   Because after it was all done, after the celebratory drinks with my attorney, after all the dust settled and I sit with time to think and look at my life now... at all my life the past 25 years and where I am right now... CDH not only took my son, but it completely changed my life.

Because of CDH, I missed out on med school.

Because of CDH, I lost my only child.

Because of CDH, I was robbed of being a mom.

Because of CDH, I was robbed of being a grandmother.

Because of CDH, my first marriage disintegrated. 

Because of CDH, I lost my home through the divorce.

Because of CDH, stress is normal for me.

Because of CDH, I will grieve for the rest of my life.

Because of CDH, I never had a "normal life", especially in my 20's.

Because of CDH, I spent many years angry at the unfairness of the world.

Because of CDH, I wanted a new family to replace the one I lost and dated the wrong men because I wanted a family so badly again.

Because of CDH, I desperately wanted to be a mom again and have a family life again and married a man wearing rose colored sun glasses.  Actually, more like blinders in a dark room.  

Because of CDH, I stayed in that marriage to keep that family years longer than I should have and lived through things no one should have to endure.

Because of CDH, I gave up a "normal life" and career to run the charity; sacrificing many things like insurance, retirement, decent pay, etc.

Because of CDH, my decision making process is different than many people.  My priorities are different.  I've seen the worst the world has to offer and the best.  

Because of CDH, I saw death first hand at 19 years old and every year since.

Because of CDH, I know how to plan the funeral of a child.

Because of CDH, I will have to battle Post Traumatic Stress Syndrome for the rest of my life, though I rarely admit that because I hate to be a victim of anything.

Because of CDH, I have to force myself to be hopeful every single day.  Because I know that happy endings do not always happen.

Because of CDH, I worry about taking care of a cemetery.  I worry about who will take care of it after I die.

Because of CDH, I worry about who will take care of me when I am old.

Because of CDH, I have to think about what I say and do and write all day, every day and how it will reflect on the charity.  I live under a microscope.

Because of CDH, I have to overcome the anxiety that it gave me to do my job to battle it.

Because of CDH, I have seen, heard, held hands through, listened to, dealt with... some pretty truly horrific things personally or through other CDH families... that would shock.

Because of CDH, I don't sleep.  I have too much work to do.

Because of CDH, I have to be careful who I date.

Because of CDH, I constantly tell a sad story... and that scares many people away as dates or friends or business associates.

Because of CDH, I have to learned to deal with constant rejection because of my sad story.

Because of CDH, I know that my face, my name, my reputation will forever be entwined with grief, sickness, death.

Because of CDH, my body has changed.  I have stretchmarks and other changes from being pregnant but no child to hold now.

Because of CDH, I will never know "normal".  I will never what it was like to be up all night with a baby who wouldn't sleep, to breastfeed, to teach a child how to ride a bike, to bandage skinned knees, to give advice, to sit in the front row at a wedding crying.  

Because of CDH, I accept things that I shouldn't, I settle for less, I allow concessions in my personal life because I've never had "normal" to compare to.

Because of CDH, I will never look at a child as just a beautiful child because I will be scanning for scars, medical equipment, rashes, coughs, etc... because the mom in me will never turn off.

Because of CDH, I became a worrier.  And I never stop.

Because of CDH, I lost my innocence.  I know bad things happen.  I know the worst happens.  I can never un-know that.

Because of CDH, I will always second guess every single doctor and diagnosis for the rest of my life.

Because of CDH, I am broken.  I am patched up, glued back together and there is beauty in my scars.  But I will never be the person I was before CDH ever again.

Now, I've had many blessings and opportunities because of my charity work and that is because of CDH and I'm not discounting that.  But I would have traded it all in a heartbeat to have my son still.  To  have never heard of CDH.   That wasn't God's plans for us though.

I'm not alone.  Every parent who has dealt with CDH has their own list.  And this shouldn't be.   I don't want anyone else in my shoes. 

I could say that CDH destroyed my life but that's not true.  It changed it.  And I would not trade my son for the world.   And my life is not destroyed.  I am not destroyed.   I am happy.  I am fulfilled.  I have a long life in front of me.  I have rebuilt.  Again and again. 

But if I had never known about CDH, my life would be incredibly different.  I'd still be married to my high school sweetheart, with a family, picket fence and a dog.  Shane would be 22 years old and have graduated college by now maybe.  I'd be looking forward to being a grandmother someday. 

Because of CDH, this is where I am right now.   And I am ok with that.  This is my life and though it is different, it is good.  I am still blessed.  But I will always wonder... always want....

Sincerely,
Dawn M. Torrence
CDH mom

October 13 - Dear Nicholas Sparks

Dear Mr. Sparks,

We met again today.  Sara Hall, one of our volunteers, and I drove out to Chapel Hill to have drinks and talk with you before your book signing for "See Me".

How appropriate that that is the title of the book when we so much want the world to see these babies fighting Congenital Diaphragmatic Hernia.

To update CDH families and to have a little fun, Sara and I made a video:



The babies need us.

Sincerely,
Dawn M. Torrence Williamson
& 1000's of very determined CDH families

October 12 - Dear Nicholas Sparks (Guest Blogger Taylor Johnson)

Dear Mr. Sparks,

I just wanted to share a little about my sons story with CDH. I remember sitting in the doctors office anxiously waiting to be called back to get an ultrasound and to get to hear my little boys heart beat.. I was around 20 weeks pregnant, I remember going into the room and everything seemed fine as I was getting the ultrasound.. I was waiting on the Doctor to come in and tell me how well little man was doing, and it didn't happen like that... I watched her as she came in and I could tell by the look on her face that something wasn't right. She sat down and said "we've found something called a hernia", but she couldn't go into detail with me because she wasn't for sure what type of hernia it was. I asked questions , trying to get answers about my babies health. Of coarse, everybody just wants their children to be healthy and ok. She didn't really have any answers for me besides that she was referring me to a specialist where they could tell me more. I walked out of the Doctor trying to hold back my tears but it just wasn't working.. I was so scared that something was majorly wrong but everybody I had talked to just said it was probably a umbilical hernia, or something simple like that. I did research and when it came to CDH, the Internet talked about how rare it was, so I thought there was no way that my baby had it. It finally came appointment day with the specialist, and they done an ultrasound and then the Doctor came in.. She explained to me what was wrong with him and what all he would have to go through if he survived, because this was a very serious condition and some babies don't make it. Kaden, my son, had everything in his chest except for his kidneys and that's why they were really concerned about whether he would make it or not after he was born. The last appointment I had , they set me up to be induced that coming Monday. That was 4 days away!! The nervousness really hit then. After around 17 hours of being in labor, they finally gave me a c-section. I remember lying there, my fiancé holding my hand telling me everything will be okay, and I didn't even hear an actual cry, just a couple little noises. He was immediately intubated. After a few minutes before they sent him up to NICU, they pushed him beside me as I was getting cleaned up and I remember tears in my eyes looking at how beautiful he was and praying to God that my little boy would be okay because I didn't know what I would do without him. After they took him away, I don't really remember anything else about that night , just waking up the next morning wanting to see him. We went up to see him in the NICU and they told us he was actually doing well. We were also told about the coarctation he had. Where everything was up in his chest, it caused his heart to be moved and caused a narrowing of the aorta. He done well that first few days of life and at 4 days old, he had his repair surgery for the diaphragm. We gave him our love and with tears running down our faces, we walked away as they took him back for surgery. They called us every hour and told us how well he was doing. After he was done with surgery, the Doctor came out and told us he did great and that we would be able to see him after they get him settled back into his room. He's done well so far with everything, they've brought him down on his ventilator and certain medicines. He finally opened his eyes to where we could see them just a couple days ago. He will be 2 weeks old in 2 days and he has a very long road ahead of him. He will have another surgery soon and we hope and pray he does as good with that one as he did his first. Then the challenging part will come when it's time to start trying to feed him again, because the first time didn't work out.. But he has so many obstacles he will go through that no child, better yet, anybody should ever have to go through. I hope that my sons story as well as everyone else's gets out and something can be done to figure out the cause of this horrible illness that's causing babies to go through all the things they have to go through. Please , if there's anything that you can do, please help.

Sincerely,
Taylor Johnson

October 11 - Dear Nicholas Sparks (Guest Blogger Brandy Hawkins)

Dear Mr. Sparks,

October is here and I know what that means, My birthday is only weeks away and after that Halloween. Then Thanksgiving, Christmas followed by the New Year and I can't forget my big Brothers birthday. There is so much excitement that comes with all these occasions. Families look forward to these holidays.

Flash back

Growing up in a large family I knew at a young age there was nothing more in this world I wanted more then I wanted to be a mother.  Marring my high school sweetheart at the age of 18   I could see my dreams coming true. 

When we decided we were ready for our little family to grow we thought this was going to be an easy task.  We were wrong.  After many doctors,  test and God willing 5 years later we were expecting.  Everything was falling into place.  We found out we would be having a boy.  The excitement I saw in my husband melted my heart.  We picked out a name.  Started buying all those baby necessities.  Everything was perfect...... We were wrong again. 

The day before my  27th birthday was the first time we heard those terrible words.  Congenital Diaphragmatic Hernia.  

Even after hearing  doctors tell me my son has little chance of life and reading all the information we found online my husband and I still had hope our Liam was going to make it.  I felt him move everyday and I knew my son was a fighter.  

December 16th was a work day and I was 28 weeks pregnant.  I woke up will this strange feeling like I just peed myself.  Being my first child I was clueless to the fact that my water broke. It was a mad rush to the local hospital were I was careflighted to the nearest hospital best suited to treat Liam's CDH.  At this time I was put on bed rest.  This meant I would not be going home till after Liam was born.  This was OK because as with every family that's expecting a CDH baby knows about the long hospital stays. Christmas,  New Years and my brothers birthday all came and went while I waited in that hospital bed.  

January 24 started like any other Saturday I  woke up in the hospital.  My dad came to visit and my husband would be taking the long drive back home to check on things.  As the afternoon approached something just wasn't right.  I started bleeding and as time went on I started contracting.  At this time everything started happening so fast.  Mad rush to L and D.  Lots of Doctors in and out telling me what to expect.  With tears in my eyes and my husband by my side we welcomed our Liam into the world.  He was 4 lbs 15 Oz.  and never made a sound.  It took them what seemed like forever to stabilize my son and take him down to the NICU.  Hearing the doctor tell my husband he would be surprised if Liam lived 30 minutes.  

It was a very long 2 hours in recovery before I got to see my son for the first time.  Seeing your baby hooked up to all those machines is  something no parent should have to see.  

Being a CDH parent you know holding your baby is just not a option when they're first born.  When the doctor walks in to ask if you want to hold your son, you know the news they're about to give is not good.  Family filled that little room and watched as my husband and I held our son for the first and last time. At 10 :48  I watched my son take his last breath in his daddies arms.  

Liam Joseph Hawkins lived 7 hours.  We never expected things to end the way they did.  We never expected to leave that hospital without our baby,  empty handed.  Looking back, I still don't see how we made it.  

So,  Mr. Sparks,  October is here and my family will never look forward to these special occasions the same way again.  A time that was once spent celebrating, is now a time we just wish would hurry up and pass.  

I enclosed 2 pictures.  One picture I believe captures the love of our little family.  The love we have for our son.  The other is one I've never really shown anyone.  This picture was taken as I watched the nurse unhook my son from the machines that were keeping him alive.  

Sincerely,

Brandy Hawkins

Mommy to Liam

October 10 - Dear Nicholas Sparks

Dear Mr. Sparks,

This is how I am spending my weekend.  At my desk, watching movies of your books and catching up on this blog. 

I have been so incredibly busy that I am very behind.  But I am determined to catch up! THIS week!  

Because this project is too important.

Because these children need your voice.

Because as loud and stubborn as I am and as many incredible volunteers that we have... we are not loud enough.

Ironically as I went grocery shopping this morning before I started writing, the Outreach NC magazine was sitting on the shelf.   What a great article about you!   What incredible timing to see that on the store magazine rack.  I'm taking it as a sign. 

Sincerely,
Dawn Torrence Williamson
Dedicated CDH mom and charity president

October 9 - Dear Nicholas Sparks (Guest Blogger Heidi Forney)

Dear Mr. Sparks,

This letter is a little different. I thought I might share how CDH affects other members of the family, the unsung heroes, and victims.

I have already shared Sean's story, and how blessed we are to still have him in our family after 18+ years of a very complicated life.  We also have two other boys, both older than Sean.  One is 21 years old, the other 32. All 3 are from one marriage, and we have stayed together throughout... Something we don't take for granted, since we know many families fall apart when dealing with CDH and other added medical issues.

Our oldest son was an only child for several years as I had multiple miscarriages, so it was a big change for him just to have 2 brothers within 2 1/2 yrs of each other.    We tried hard to give him the attention he needed, but with mom at the hospital so much, and dad needing to work (he worked from home most of the time), and keep track of the little one at home it wasn't easy. Sadly as he got older he made poor choices, and got in with some bad crowds, has had some jail time and is currently in prison.  He wants to turn his life around, and is trying to make some better choices, only time will tell if he can follow through. He knows we are here and we love him, but will not enable his poor choices either.

Our 21 yr old has had a few health crisis of his own in the last few years. He has been an amazing big brother to Sean, loving and caring, helpful with some of the easier medical procedures (holding his hands when I did dressing changes, adding food to his feed bag, etc), and great at distraction when in the hospital.  While his health issues have been difficult, he has come through them with dignity and as he moves on we could not be more proud of him.  He has learned compassion and has a passion for special needs and life, in particular life of the unborn. Truly a special young man.

My mother in law lived with us for 4 years as she battled cancer, so not only did she see what we dealt with in our life with CDH first hand, but we were able to minister to her first hand as well.  It was a special time for our family, filled with love, and heartache, but not something I would change.  She and Sean shared a bond that no one else can truly understand... They both "ate" with a tube, had pain, way too many doctor appointments, and had to rely on others to take care of their needs.  Precious memories indeed.

And life goes on. It changes. Our view of what makes a family changes, as many members of our "family" are not blood, but those who care for us and our children. The therapists who take their lunch hour or skip dinner to come visit in the hospital to cheer up a little boy who misses them. Who think of him while on their own family vacation and find a gift they think he will like. The friends across the country who pray for each other and keep track of special dates, events in each other's lives. And who love each other even when we haven't even met in person. That CDH bond is strong.... We are a family.

Thank you for reading and for caring, and for any help you can give,

Heidi Forney

October 8 - Dear Nicholas Sparks (Guest Blogger Clare Retterer)

Dear Mr. Sparks,

My name is Clare. I am writing on behalf of my husband Dave and our precious Cherub, Sammy. I have been meaning to tell his story for over a year but haven't found the time until today.

Dave and I were married for two and a half years when we decided we needed a baby to share all our love with. Our first attempt to get pregnant was successful. I guess standing on your head really does work. My pregnancy went along perfectly. I had an ultrasound at three months. We were told things looked normal. I was supposed to have another ultrasound at five months but since the first one was normal and we wanted the sex of our baby to be a surprise, it didn't happen.

I went into labor 10 days before my due date. The labor and the delivery went smoothly and without a single problem. At 2:50 p.m. on October 9, 1999, Samuel Lee Retterer was born. We fell in love with him the instant we saw him. I wanted desperately to hold him but his color was very poor and the nurse said he wasn't breathing. She told us that he probably just had some fluid in his airway but my gut told me it was something more serious. The longer the doctors worked on him the more worried we became. One minute after he was born his APGAR score was 1. Finally, about 10 minutes later, after they intubated him, I was able to hold my sweet Sammy as a nurse pushed air into his lungs. It lasted less than a minute before he was taken away from me to go to the NICU. I told Dave to stay with Sammy.

Half an hour later, two doctors came to my room to tell us the devastating news. Our son had a severe, right-sided, Congenital Diaphragmatic Hernia. He had a 50/50 chance of survival. I was numb with shock. The first thing we thought to do was pray. We prayed only for the Lord's will for Sammy, no matter what his will was. We felt so helpless. We realized we were dealing with something that was completely out of our hands and we had to rely on doctors, nurses, drugs, technology and most of all, God.

About four hours after the delivery, I was finally able to get out of bed. I was wheeled into the NICU to see my son. I thought he would be hooked up to a couple of tubes but what I saw was totally unexpected. Dozens of monitors, tubes, wires, machines and nurses were helping my baby. I broke down in tears as I saw all the things it was taking to keep my Sammy alive. I had to maneuver through everything just to touch his little hand.

Sammy's doctors decided it was critical that he be moved to a hospital that had an ECMO machine in case he needed it. Children's .Hospital of Denver was just across the street from where Sammy was born. At 14 hours old, they transported him. Fortunately, Sammy never needed ECMO.

By the time Sammy was four days old, he was stable enough to have surgery to repair the hernia. The surgery was successful but Gore-Tex was needed to patch his diaphragm. Sammy now was on the road to recovery and each day got a little better for him. He was on a high frequency ventilator for about two weeks, then the conventional ventilator for another week and then finally after Sammy extibated himself twice, they put him on oxygen through a nasal canula. He was also on nitric oxide for two weeks along with an assortment of other drugs including several high blood pressure medications. After Sammy proved he could nurse and gain weight we were told he could go home.

Finally, after 34 days in the hospital, we were able to bring Sammy home. We were thrilled! No more crying every time I had to say goodnight to my baby and leave him to the care of others. That was the worst. He left on oxygen. When Sammy was two months old, his lung unexplainably collapsed. His doctors tried several ways to get it open but we have never been successful. We would like to know if any other child with CDH has had a collapsed lung. If so we would like to hear what therapy your child had for it.

Sammy is now 15 months old. He is a very happy and energetic boy. He is a little small for his age but has a big personality. He is walking and has caught up as far as his development goes. He is off all his reflux meds and inhalers but still gets one nebulizor daily for his collapsed lung. Sammy is still on oxygen for about 20 hours a day. We are hoping we will be able to take him off it completely by the spring of 2001. He just battled pneumonia and had to be hospitalized over Christmas. He came through it bravely and quickly. Amazingly, that was the first time Sammy had ever been sick. I am a total germ- a-phobic mother and I guess it paid off.

We want to take this opportunity to thank a few people. Dr. John Kinsella and his team, especially Nancy Wass. Dr. Kinsella is one of the pioneers of Nitric Oxide and was very kind and helpful to us. Dr. Joe Janic who performed Sammy's operation. Dr. Adam Rosenberg and everyone else at the Special Care Clinic who has taken wonderful care of Sammy. The nurses who took care of Sammy when he was born, especially Christy, Brenda, and Amy. Nurses simply do not get all the credit they deserve. We want to thank Dr. Jan Paisley who has been Sammy's primary doctor. Jan has gone out of her way for us and not only been an outstanding physician but a wonderful and loving friend. Finally, we want to thank all of the thousands, literally, of family and friends for their prayers, support and love. There is nothing I can say or write about Sammy to express what a remarkable boy he is. He lights up our days and our lives with his smile. His laugh is music to our ears. His very wet kisses are the reason we get out of bed. We thank the Lord every day for our precious Sammy. I know that He is the reason Sammy is with us. We thank Sammy for coming into our lives. He has brought us so much happiness. He has also brought us closer to God and has made us realize what is really important in this life. We love you Sammy! Thank you for letting us share our story with you and may God bless you and your Cherub always.


Written by Samuel’s mom, Clare Retterer (1999, Colorado)

October 7 - Dear Nicolas Sparks (Guest Blogger J.C. Kuehn Miller)

Dear Mr. Sparks,

The weather is changing. Summer is over and autumn is upon us. I woke up this morning and stepped out onto my front porch. Even with my lovely, fluffy robe wrapped around me, the chill of the dawn air nipped at my skin.

I personally love the fall with its beautiful colors, state fair, bonfires, and warm potato soup. Our sweaters are able to escape their storage bins. The anticipation of Christmas leaves the children on the edge of their collective seat. Jack Frost is waking from his long slumber.

Though all these images make the average person ripe with excitement, there is another side to this story.

Fall also kicks off the flu season. Runny noses, deep chest coughs, fevers, and body aches are a part of our life. However, these aggravations are far more dangerous to tiny babies whose respiratory systems are already compromised. When the diaphragm fails to fully form, this allows the bowels to move into the chest cavity where the lungs should be.

This can be a difficult time to newborns, teenagers, and adults alike. It leaves many vulnerable and estranges families from being able to see the precious young cherub out of fear of spreading some sickness to the child.

Imagine giving birth to your child and immediately handing the baby over to the doctors and not being able to hold it for weeks or months. Try explaining to your parents that they cannot visit their grandchild. 

It even extends to the cherub’s schooling. Preschools are notoriously infested with germs and sickness. Because of their weakened state, the cherub may miss this valuable time before they enter elementary school.

All this just goes to show that something that we enjoy and take for granted can be a very serious matter for a CDH family.

So, enjoy the hot coco, put on some comfy slippers, and ALWAYS ask the parents of the Cherub before dropping by the hospital.

Sincerely,

Jason C. K. Miller

October 2 - Dear Nicholas Sparks (Guest Blogger Nicole Clark)

Nicholas Sparks,

Our families’ story with CDH: I grew up fantasizing about the day I would get married and have a family. In 2010, I did get married but a family, the most important thing to me, was pushed back for some reason or another. When the time came we decided to go for it, just to find that we had fertility issues. We thought we were going to need to do the most invasive fertility treatment, IVF (invetro), but we were blessed with Christian after one IUI (insemination).

The first half of my pregnancy went smoothly. I really wasn’t sick and besides being dead tired the first three months, it wasn’t that bad. I couldn’t wait to find out if I was having a boy or a girl. I just loved shopping, I couldn’t wait to buy cute little out fits and set up a cute themed nursery. I didn’t really buy anything because I wanted to get gender specific clothes. I just needed to know the sex of my baby. We found out it was a boy, but little did I know I would never really get to buy clothes, toys, or a crib for him.

At the 20 week ultrasound, I held hands with my husband anticipating the gender to be revealed, I felt like I waited forever to find out. We were told we were having a boy but the ultrasound took a lot longer and the tech had left to talk with the doctor. They later told us they needed better pictures, but she thought it was a Diaphragmatic Hernia. She said it wasn’t a big deal, just that he would need surgery after birth. We were then referred to a specialist.

I did some research on Diaphragmatic hernias to prepare myself, I found out that this was serious. I could of done all the preparing possible but nothing prepares you for hearing the number one option you have is to abort the baby you wanted so badly. A second option was offered… to go to a bigger hospital for a second opinion. It was confirmed that my son had a right-sided Diaphragmatic Hernia. They couldn’t see any lungs because his liver was up in the chest squishing his heart. I wouldn’t terminate, so I got the second opinion. The second opinion gave us a little more hope, 50/50 chance for survival. Though he was given 50 percent chance of survival, his prognosis was severe with a right-sided hernia versus left, liver up and small amount of visual lung on ultrasounds. After that, though there was some hope, I still mourned my child and the chance to have a normal pregnancy. I watched other women be excited about their pregnancy, while I was, as I explained “one foot in, one foot out”. I loved my child but I couldn’t fantasize about his first step, the first word he would say, or any normal experience because I didn’t know if I would take him home from the hospital. I loved carrying him, but I couldn’t hold onto the idea that I would get to keep him.

I went to an ultrasound every other week and then once a week. I loved seeing all the great ultrasound pictures and him moving around so much. Every ultrasound was a gift to be able to see him, but each time was very nerve wrecking also. By the end of my pregnancy, I ended up having very high amniotic fluid and had an increased risk of preterm labor. I left work early to make sure I was in the city where I was to deliver, which was two hours away from home. This was my first child. I didn’t know what to expect in delivery on top of the uncertainty of Christian’s fate. So many questions… Would he survive birth? Would they be able to stabilize him after birth? How long would he live?

After a long and dramatic birth, Christian came into the world on October 2nd in 2014. They were able to stabilize him; they wheeled him over to me. I touched his hand, but I don’t remember this very much. I was very scared of what was going on with me. I was having a postpartum hemorrhage and was losing a lot of blood (I ended up being ok). I later regret not paying more attention at this moment.  I remember the first day I praised God every hour that I hadn’t gotten a call from the NICU about him getting worse. I so badly wanted him to beat this. Within 48 hours of his birth, Christian needed to go onto ECMO, a very risky lung/heart bypass machine. Life in the hospital was scary every moment. I was scared I would get him sick and I feared others would make him sick. I at times limited interaction for fear I would get him sick and he wouldn’t make it. I was afraid to be too loud or to touch him and make his pulmonary hypertension worse. I feared the numbers, seeing too many doctors in his room, afraid his stats would crash and he would die as I watched, and afraid to just open the doors of the NICU for fear of what I would see or hear. Even outside of the hospital, I felt I had to be ready to get news my son was gone. I couldn’t relax, I felt I had to always be on guard for bad news and I always felt bad I wasn’t in the hospital. I did this for four days, there are families that live in this fear for months in the hospital. Even the families that bring their babies home have different fears for their whole child’s life. Some see their child fight for months or years and then lose them.

I attended rounds every morning. Here doctors talked about babies and their treatment. I attended them even though it was scary me to hear them talk about all that was going on with Christian. It seemed every time during rounds Christian’s stats wouldn’t look good and they had to do something to help him. The last night he was with us, I was planning on reading a few books to him like I had the night before. I never wanted to leave the hospital with him not doing ok. So I waited but things only got worse. This was it. He was having internal bleeding from a chest tube from a pneumothorax while he was on ECMO. After four days, I finally got to hold my son. On the other hand, he was on a pillow still hooked up to the ECMO machine and I was saying goodbye to him. I never got to see his eyes open or feel him grip my finger.

Before having Christian, I didn’t know about CDH. We need more awareness to fight this. Families shouldn’t get a 50/50 chance left wondering all pregnancy which side of the coin flip they will be on. Or be scared living in the hospital hoping to leave the hospital, not knowing if they will come home to live a life with their child or come home to make funeral arrangements.  I came home to make funeral arrangements. I will have to live a life without my son and have a family that will always be missing one of its own. Child loss is a lonely painful road a parent must go on and it is a road they will never truly leave. I am reminded daily my child is not here. It can be as simple as seeing a happy family, hear people talking about their children, seeing a smiling baby or a pregnant mom. No one can go around and not see these things because they are supposed to be happy things. Pregnancy and giving birth to a child should be the best experience in the world not one of the worst.

I hope that someday we will know more about CDH and can help prevent it, so that there will be one more car seat and one less grave. Or that there will be one more parent that gets to see their child open their eyes, smile at them, and grip their finger. Or one more parent that gets to see their child walk, talk, and go to school. This can all be possible for future parents, but we need help. We need more awareness and support to aid research. Raising awareness and funding research could help many future parents live a life with their child, not without. We can take a huge step forward with the help of Nicolas Sparks. Please Mr.  Sparks, we need your help!

Sincerely,

Nicole Clark from Iowa

Mother of Angel Christian Russell Clark

September 20 - Dear Nicholas Sparks (Guest Blogger Sara Ysasi)

Hello Nicholas Sparks,

This is my daughters story with CDH. I remember going for a routine sonogram at 24 weeks. I remember laying there and feeling her go over the same spot on my belly over and over. She then said I need to go get my boss; I see something that isn't right. The other lady came in and took a look herself. She then began to tell me what she saw and how it wasn't right. They told me they would have to send me to see a specialist in Dallas. A week later I went to see a doctor who specializes in sick babies. She told me that my daughter Aubrey only had about a 30-40% chance of making it. They told me that she had her liver, spleen, stomach, small and large intestines all up in her chest cavity. So every month I would go down to Dallas and they would tell me each time things didn't look good but as long as she stayed in me she was safe. At my last appointment they told me I would be induced in a week. I had my daughter on February 25th. She was intubated right away. They doctors where very impressed with her because she only required a high-frequency oscillator.  At four days old they tired to change her to a regular ventilator and she did wonderful. At six days old they did surgery to repair the whole, the hole was so big the had to use a gor-tex patch to close the hole up. A week later they took her off the ventilator and put her on oxygen. At first she did good the they had to got up on the amount of pressure they were giving her. A couple of days later she was down to almost room air. So we worked of feeds and she did great! She then came off oxygen too. A month later on March 25th we got to take are baby home with no medical equipment. She is now seven months old happy and healthy as could be! I'm writing and sharing my store so that maybe one day we can find out with cdh happens to these sweet babies, and better way to safe them!

Sincerely,
Sara Ysasi

September 19 - Dear Nicholas Sparks

Dear Mr. Sparks,

I am driving back from the Toronto conference with my mom and my aunt.   My family is French Canadian and I couldn't not take them with me to see the land that my grandfather was from.

Driving back home we drove through Acadia and by pure luck (or God's guidance) we stumbled upon a reenactment village.   And in the village was a restored ancestral home of one of my great-great-great... great-grandfathers Theriault.

We got to visit inside the house, met a distant cousin who sang a song to us about our family in French, ate bread baked in the fireplace and got to raise some CDH Awareness.

The only thing missing was my grandfather and my son, bless their souls.  But they were there with us.  And these Save the Cherubs photos with wings are very dear to my heart.

Sincerely,

Dawn M. Torrence Williamson
Grieving CDH Mom

September 16 - Dear Nicholas Sparks

Dear Mr. Sparks,

We didn't get much time to see Toronto at the CDH Workshop Conference, but that is just fine because we are here to work, but Josh and I did get to see a few things while walking back and forth to the conference.

And we did get to meet CDH Survivor, Edwina Chu, and see our friend, Kristin Aigner, who heads the CDH Clinic in Peoria. 

We also managed to raise just a little bit of CDH Awareness.

Sincerely,

Dawn M. Torrence Williamson

CHERUBS President and Founder

September 15 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today was another incredible day at the International CDH Workshop.  Josh and I got to present more research in the form of a poster presentation.

CHERUBS alongside research by Harvard, Columbia, Children's Hospital of Philadelphia, Great Ormond Children's Hospital in London and so many other incredible institutions.  What a dream come true. 

 

Our very first accepted medical research abstract from our very own Congenital Diaphragmatic Hernia research.  This was an incredibly big deal for a little mom from North Carolina without a medical degree.  This is a incredibly big deal for every mom and dad, grandparent and survivor at CHERUBS.  It was a huge team effort.

But I must say that without Jason Miller, our office manager who tirelessly worked on this data for months... we never would've pulled this off.    We are blessed to have him on our team.

What a blessing all around.

Sincerely,
Dawn M. Torrence Williamson
CDH fighter

September 14 - Dear Nicholas Sparks

Dear Mr. Sparks,

Today I am in Toronto and gave my very first speech on CDH research at a medical conference.  I was overwhelmed and terrified.   But I did it.  It has taken 20 years to get here and WE did it!

We spent years on our research abstract that we have a poster presentation for but just 2 weeks before the conference we were asked to present a speech on

Our families rallied together and we had a great response on such short notice.

Why is this research so important?  Why was this speech so special?  Because CDH families have never had a collective voice in research before.  Because families are blindly raising their children not knowing what to expect because most of these children did not live until the 1980's.   Because as a bunch of moms and dads, presenting research data at the same podium as surgeons, pulmonologists, neonatalogists and fetal doctors... this was the first step to being able to help our own children on a much larger scale.

A first step, but a tiny one.  They still need research funding.  They still need awareness.  They still need more hope.

My job is no where near finished.

Sincerely,
Dawn M. Torrence Williamson
Determined CDH Mom