October 20 - Dear Nicholas Sparks (Guest Blogger Judy Ginns)

Dear Mr. Sparks,

Hi my name is Judy and I am the mother of Hayley who is 16 years old, and a survivor of CDH. Hayley was born on 30th May 1984 at 6.10am in the morning. She was 6 lb 15 oz. I dreamt two weeks before she was born she would be born with an abnormality, and I was not surprised when she was. Mother's intuition they say! Hayley was born in one and a half hours, blue and quite lifeless. They took her off to the nursery and put her in an incubator on oxygen, hoping she would start breathing on her own. When her condition deteriorated soon after, the paediatrician was called in. Hayley was intubated, and a retrieval team was called in from a city hospital. They told us the prognosis did not look good, as they thought she had a large diaphragmatic hernia. I did not have any idea what that was, so my husband and I could only be guided by what they told us. That day was such a blur, driving to the city just hours after I had this beautiful baby, not knowing what would happen next. Hayley was taken to surgery when she was just 8hrs old. They repaired her left sided defect, and pulled her stomach and intestines down into place. She also had a large pericardial cyst around her heart, so they drained a little of that and used the tissue to repair her diaphragm. She was returned to ICU and remained on a ventilator. Her oxygen sats did not improve and her x-rays still showed large amounts of liver in her right chest. Her lung thankfully had expanded a little on the right side. She battled on through the next 6 days, having good and bad days. ON day 7 they decided to operate again. This time they removed two ribs on the right side and pushed the liver down, removed more of the cyst from the heart, and repaired the right side. Hayley also had a defect in the middle of her diaphragm, which was not able to be repaired. She was sent back to ICU still on a ventilator with the "wait and see" attitude. Hayley had a chest drain, which became infected 2 days later which did cause some concern, but she overcame that, and a bad bleed from her umbilical drip and she came through that also. Hayley just kept improving to everybody's amazement, and after 6 weeks she came home. What a nightmare that was with feeding! It would take her about 1 hour to feed from me and then she would vomit the whole lot again, just in time for next feed. After 3 days she stopped feeding all together and went a terrible grey colour. I took her to the paediatrician, and he put her in ICU with pneumonia. Her hospital stays were always long and frequent in the first year. Just one chest infection after another, and her reflux was so bad, I didn't think she would ever .get well. When she wasn't in hospital I would have to do physiotherapy three times a day and thread a suction tube down her nose into her chest to suck her lungs out, to try and stop the infections. It seemed her underdeveloped lungs were not coping with the stress. At 1 yr old she only weighed 7.5 kgs.. Hayley didn't walk until she was 22 months old, and when she started to walk her health also started to improve. She still had hiccups along the way, but the next years seemed to sail through for her. It is funny,. but bronchial pneumonia, chronic asthma, RSV infections, bronchillitis, chronic reflux, etc seemed to be just run of the mill illnesses to our family, were unheard of to my friends, and their children. Hayley is now sixteen, still tiny, weighing just 40kgs, and surprisingly very healthy. She still has an anterior diaphragmatic hernia in the middle of her diaphragm where her left lobe of her liver sits up through it. She still has a small pericardial cyst around her heart, and her heart is rotated. But besides that she is normal!! They will not attempt to repair the abnormality at this stage as it is not causing any problems, but they will keep a close eye on it, and having children of her own may not be possible, but we will cross that bridge when we come to it. So for a little girl who they said on many occasions would not live she certainly did prove them wrong.

Sincerely,
Hayley's mom, Judy Ginns (Australia)

October 19 - Dear Nicholas Sparks (Guest Blogger Joanne Pedler)

Dear Mr. Sparks,

Our first baby, Isaac, was born without life, but not without love, last August. A devastating, crushing time - the longings, the urges and the dreams tumbled into a black hole of sadness and tears. I've never felt the fear and emotional loneliness that shrouded me when I woke in the middle of the night knowing our baby had died in utero. I had always been a bit of a skeptic about this maternal instinct thing – thought what I had, instinct wise, I could fit on the top of a pin. I now trust my instincts, fully. So does my husband, Peter. Through the inevitable scans, tests, still birth, tears and turmoil that followed we were overwhelmed by the love and support we were shown. From our wonderful local clinic sister, to the RFDS staff, the Doctors, the ambulance driver, hospital staff - more than just a professional passing interest. Genuine support, spontaneous hugs (lots of them), letters and phone calls. We, Mr & Mrs Independant - were learning to lean heavily on others, and to trust them with our deepest feelings and emotions at a time when they knew better than us what we needed! A big step for us! Funeral time. Self preservation, self focus. Still huddling together, and cocooned in our grief we wanted a private funeral. Just Isaac, and us, our parents, close friends. Unrealistic view in a small community. If you've ever lived in a small community you'll know that babies are " community property!" But we didn't want to expose our private thoughts and pain to these people we lived, played and worked with. We decided, hesitatingly, that we wouldn't hold a private funeral - and that we'd cope with the handful of extra people who came along on the day. Isaac was buried on a bare, open hill that was too hard to be mined for opal and chosen as a cemetery instead! It was a beautiful spring day, not a breath of wind - the type of day we usually remember for its perfection. As we said our final farewells to our little man, 90 people joined us. Tears flowed freely, tough miners turned and blew into their handkerchiefs with uncharacteristic quietness, mothers wept. So did we - unreservedly - surrounded by people who stroked, held, hugged, comforted and supported us - unconditionally. Men, who would normally pass in the street with a cursory nod clutched Peter in bearhugs, and women patted, rubbed and cuddled me. To this day we marvel at the strength and confidence Isaac's funeral gave us. We do remember it as a nearly perfect spring day - for other reasons - and to think that we nearly denied ourselves the support of a small community....... But as time passed we saw that the support was not only ours. One by one, over time, folk came to us, trusting us with their stories of personal loss, sometimes lengthy, always tragic. People who we had little to do with before would pour out their feelings, their grief, their emotions, the anguish they had experienced over the loss of their child. Isaac's death gave people in a small town a chance to relive their loss, and often grieve it for the very first time. For parents whose child was whisked away at birth, and never spoken of again - Isaac's funeral was for them too. A chance to say goodbye to their baby as well - a chance they were never given. We developed new skills of compassion and understanding. From adversity we found new strong friendships bound by trust of the innermost feelings sewn together by the common thread of the loss of a baby. In their own cruel ways, the grief and agony of the past year had a hidden agenda of wisdom, strength and maturity to guide us over the hurdles of life. Our marriage is stronger, and we talk more of feelings and expectations. We no longer feel as threatened when the other partner thinks differently, moves in a different direction. Different ways and stages of grief taught us to deal with that. Our relationship with our Doctors has improved - we now say what we feel, what we want and why! We have a mutual and healthy respect of each other. We no longer hesitate to look for support when the going gets tough.

The unkind blows dealt to us last year have transformed into a positive experience that benefit us for the rest of our lives. Thank You, Isaac. As Peter says, " Isaac taught us lessons in life we didn't know were there to learn."

Sincerely,
Isaac's mom, Joanne Pedler (Australia)

October 18 - Dear Nicholas Sparks (Guest Bloggers Stacey & Chris Garner)

Dear Mr. Sparks,

Hi! My name is Stacey and I have a son named Christopher Michael Garner, II who was born with a right-sided CDH. I had a normal pregnancy and two ultrasounds and we didn't have a clue anything was wrong until he was born blue and unable to breath. As soon as he was placed in my arms, he was snatched back out again and put on his little bed in front of my husband and I while he was being bagged. I watched a nurse shake his head and I could've died. I was told later he died there and while being transported to Egleston Children's Hospital in Atlanta, Ga. And while going through the doors at Egleston. At first, they said he wouldn't be transported to Egleston because he was so sick, he wasn't expected to make it anyway. Then, thank God and Dr. Ahmed and all the other staff there that day at Eastside Hospital in Snellville, Ga., he was excepted and the Angel ll team was sent to transport him about 5 hours after he was born. Right after, I was released too and on my way to Egleston. When we got there he was already placed on ECMO where he would stay for a miserable 10 days. Then he started to have seizures, fluid on the brain and heart and had to be taken off ECMO. He stayed on ventilator and two weeks after he was born, he had his surgery to repair his CDH, by in my eyes one of the greatest people in the world, Dr. Parker, who also did the ECMO. Right before surgery we found out he had a good bit of brain damage and was told he'd probably never walk, talk, eat by himself or do anything for himself. I put him in God's hands and just prayed. It was a rollercoaster ride and there was several other problems. It seemed like it was something else everyday. About a week after surgery, he finally came off the ventilator and a few days after that he was moved out of NICU on oxygen and a feeding tube. About a week after that he came home on very little oxygen and no feeding tube. About a month after that he came off oxygen. He stayed in the hospital a total of 47 days. The main problems were, the CDH, respiratory distress, persistent pulmonary hypertension, infarct of the brain, and withdrawal syndrome to the pain medications. He was sent home taking medicine for reflux, seizures, and he takes breathing treatments. I am happy to say that he is doing great today at 2 ½ yrs. old. He now takes low doses of tegretol for seizures, which he hasn't had since he was in the hospital, and vanceril and albuteral breathing treatments. The first winter was kinda tough, he went though a lot of prelone, but every year he seems to get a little better. Hopefully, he's growing out of it. I was told he might have a speech problem, I don't believe he will though, and if he does, it's a far cry from being retarded and in a wheelchair for the rest of his life and that is what we all expected when he came home, and I would've taken him that way, as I'm sure any mom would. Oh yeah, he walked at 10 mos. old. His doctors call him a miracle child, but as one lady said, they're all miracles of God. Thanks for letting me share my story.

Sincerely,
Michael's parents, Stacey & Chris Garner (Georgia)

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 15 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are down to 1 week before the 2015 Masquerading Angels Ball.

Tickets are flying, feathers from wings are all over the office (literally), plans are being wrapped up and auction items are being delivered.

It is like planning a wedding every single year.  That you ask for sponsors to pay for.   With gifts that you need donors to donate.

It's like begging for a wedding every single year.

But this is our 20th anniversary celebration and actress Patsy Pease from "Days of our Lives" is our celebrity guest.

And I don't have a date.  Because you turned me down (insert smirk with sarcasm here).   I know, I know, you have other plans already that outrank our charity event.  I agree and understand.  That just means that we will have to find some other way for you to learn about CDH, meet families and give us a chance to get you to open your heart to this cause that so badly needs your voice.

Sincerely,
Dawn M. Torrence
Tired CHERUBS President

Photo by RDU Media

Actress Patsy Pease

Photo by M. Eric Honeycutt at VegaBlue Studios

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