NEW STORIES OF CHERUBS Book - Submission Deadline September 30, 2013

[GerryFreed]

From the Point of View of a Brother and Father (Gerry Freed 01/2013)
From my position as the older brother of a Right Sided CDH Survivor and the Dad of two Surviving CDH Children (a Daughter-Right Sided CDH and a Son Left Sided CDH). Things looked a bit different.
I am the eldest son of a Mennonite Pastor. And as such I (we) were taught from little-up and came to understand that our relationship with God was first and that our commitment to Family was a very close second.
In late June-early-July of 1972, I was granted my first Leave of absence (after only two-Weeks of enlistment) from the U.S. Army (Fort Knox, KY). This was a Very Unexpected Emergency American Red Cross leave request due to my then 8 year old brother being at Death’s-Door due to some of the complications of his Right Sided CDH. I remember being equally concerned about my brother’s condition as I was about reporting to my Commanding officer for this request. Once I went through two practice sessions of reporting, I went through the real-thing and then was put through a crash course of presenting myself conduct-wise while wearing the U.S. Army uniform. The next thing I knew I was being whisked off very quickly in a Taxi Cab that had been waiting for me. I went by Taxi from Fort Knox, KY to the Louisville, KY Airport to catch a flight to Cleveland, OH, with an American Red Cross representative that held my pre-paid airline ticket. The next thing that I knew I was deplaning in Cleveland, OH and going directly from the Cleveland Hopkins International Airport again in a Taxi Cab that had been waiting for me to Lakewood Hospital to visit with my severely ill younger brother, Terry Freed.
All of our family had become much too familiar with the Touch-N-Go-Status of Terry’s Health growing up, I have memories of helping our mother push-in on Terry’s Abdomen as she wrapped it with an ace bandage (the area purposely herniated to grow tissue for use in the series of surgeries to repair his missing Diaphragm), Helping with the removal of stitch material that should have disintegrated but instead festered and worked it’s way to the surface, or Terry’s constant incision area care as he would often scrape it and require cleaning and bandaging. We had also been told so very many times that “He would not make it”. This time in particular he was suffering from an extremely serious infection in the small intestinal area due to some previous complications related to his Right-Sided-CDH. Terry again pulled through and I went back to Fort Knox and the U.S. Army. We actually got to the point that “Terry Is Having Health Problems Again” and that he would be fine afterwards became the standard for us.
While Home on Leave in December of 1974, I was introduced by my sister (Sharon Freed) to my Now wife Debbie Christman. We dated and were then married in July of 1977. We had never once considered that we could potentially have a problem related to CDH if we were to have Children. We were extremely excited to find out sometime in June of 1978 that Debbie was pregnant with our first child. Then in February of 1979, our Daughter Candace Louise Freed was born and appeared to be in all ways a healthy baby girl! At around 9-months old Candy displayed some problems breathing and appeared to be in some pain around the right side chest area. We took her to a nearby Hospital and it was confirmed that she had a Collapsed Right Lung due to the right side diaphragm giving way (herniating) and that her Intestines had pushed through causing her right lung to collapse. She was transferred to Rainbow Babies and Children’s Hospital (Part of the University Hospital’s Case Medical Center) Where she underwent the surgical repair of the Right Sided CDH with a prosthetic patch by Dr. Robert Izant Jr. (then Chief of pediatric surgery at UH). Once recovered from her surgery Candy was a very bright normal child. And then we were reminded of my brother, Terry’s problems related to CDHs. We had always planned on having more than one child BUT now we were very concerned that we could potentially have problems related to CDH with a second child. We spoke to our OBGYN and to Dr. Izant about our fears. We were assured by both that this instance of CDH with our daughter was a fluke and that for us to have a second child with CDH would be “Highly Unlikely”. We decided in late 1982 that we would go ahead with our plans for a second child. Debbie conceived but was hospitalized with spot through bleeding and was put on bed rest in February of 1983. Our Son, Charles Wesley Freed-II (Named after my fraternal Grandfather) was born in September of 1983 and was diagnosed at birth with having a very severe case of Left sided CDH. He was transferred to Rainbow Babies and Children’s Hospital and underwent the repair of the Right Sided CDH using a prosthetic diaphragm by Dr. Michael Gauderer at two hours old. Charlie displayed or developed many other conditions over the year directly or indirectly related to the CDH. (i.e. The need for a Liver Resection, Hydrocele repair, Correction of Left testicle failing to descend, The need for long term intubation, SIDS-Sudden Infant Death Syndrome, G-Tube feeding, A failure to thrive, Frequent Aspirations needing a Bronchoscopy, Nissen Fundoplication, Behavioral Feeding Training, Constant need for Postural Drainage with percussions and vibration with suctioning, Epilepsy, Scoliosis, Attention Deficit Disorder , Hepatitis-C, Intestinal Mal-Rotate Intestinal Adhesions and Blockages requiring surgical resection).
The three (Brother Terry, Daughter Candace and Son Charles) are doing Very well now - all things considered.
My Brother, Terry Freed, is now 48, Married, Father of two Children (Steven and Sara neither of which have CDH) He continues to have problems related to Kidney Stones and Intestinal Mal-Rotate, Intestinal Adhesions and Blockages. He has had a total of nine surgeries thus far. Terry Freed and I Just attended the CHUERUBS 12th Annual Ohio CDH Picnic, Saturday August 18, 2012 in Hillard, Ohio (Near Columbus, Ohio)
Our daughter, Candy, is now 33, Married, Mother of two Children (Noah and Henry neither of which have CDH) She has received her Master’s in Sociology and is teaching and working toward her Doctorate in Sociology. She has had problems with Adhesions during a Gall Bladder removal. She has had a total of three surgeries thus far.
Our son, Charlie, is now 28, Married, and is a Step-Father to one child (Jade). He continues to have problems related to Intestinal Mal-Rotate, Intestinal Adhesions, Intestinal Blockages. He has had a total of 26 surgeries thus far. We have just been informed that we should be the Grandparents of twin girls in July of 2013.
My youngest Brother, Larry Freed, Fathered a Child that did not survive an attempt to correct CDH Prenatally.
I have created a website about our family’s CDH journey, It is Now located at:
http://reocities.com/cdh_freed_family/

[SarahC]

Subject: Case, Olivia

Olivia’s Story
By Sarah Case (mom)



I was a traveling nurse living in Arizona and is where I met my husband. My entire family resides in Pennsylvania. My husband’s family where scattered over the country. I was ecstatic when I found out I was pregnant. One of my dreams were coming true. We didn’t find out what we were having because I wanted to be surprised. Deep down inside I wanted a girl because there was no grand-daughters on either side of our family, but either which way it did not really matter.
Besides being extremely nauseous and “green” weeks 7-10, my pregnancy was uneventful. I enjoyed being pregnant so much that I felt like I could have been pregnant forever. My daughter Olivia Catherine was born on May 31, 2010. I was admitted into the hospital around 10:00 am and she was born at 4:13pm that afternoon. After two pushes she popped out and let out one big scream. I had NICU nurses at my bedside to due meconium in the fluid, and they took her to the other side of the room before I could even get a good look at her. I don’t recall it bothering me too much because I knew I would get her back in a few minutes, however, that was not the case.
One big scream was all that came out of her. After a few minutes I started to wonder why she was not crying. The NICU nurses placed a pulse oximetry on her and it read in the 40’s%. Being a nurse myself, I knew that was not a good sign. The words out of my mouth were “ that can’t be right.?” No response. They immediately took her away to the NICU as my husband accompanied.
I just sat in my bed in shock and disbelief. Waiting for my husband to come back with her, crazy thoughts were going through my head. My husband returned and instead of Olivia with him, it was the neonatologist. He came to tell me that they had to intubate Olivia because she was not breathing right and obtained a chest X-ray which had showed her intestines up in her chest cavity, and no sign of a left lung. He proceeded to tell me this defect was called a congenital diaphragmatic hernia and her chances of survival were 50%. The are planning to fly her to the Children’s Hospital next town over.
My heart sank into my stomach. I only heard muffles coming out of the neonatologists mouth from then on out. My dreams were being shattered. The happy tears and joys were replaced with fear, sadness, anxiety and sad sad tears. Gathering myself together, I had to pick up the phone and call my family. I had no idea what to say, or how to say it. Which comes first, “I had a girl and she is sick” or “my baby could die and oh by the way, it’s a girl everyone has been waiting for?”. Wiping the tears from face, I picked up the phone and called home. My mom answered and said in an exciting voice, “Well, what is it?” My response was “It’s a girl.” I guess my mom heard the fear in my voice and asked me what was wrong. I told her that Olivia was very sick and that she had a breathing tube in her mouth and had only a 50% chance of survival and I didn’t know what to do. I hung up the phone and the nurse came in and asked me if I wanted to go see her before she left for the Children’s Hospital
My beautiful tiny baby girl, lying there so limp, with tubes and wires and everything else coming out of every orifice of her body. I put my finger into her little hand and she held on to it. I had a few minutes to talk to her, get our first and maybe our last picture as a family before she was whisked way.
I was discharged from the hospital a few hours later that night, and arrived at the Children’s Hospital. Walking into the NICU, my body was so numb. I was on autopilot. Why was I here? What is congenital diaphragmatic hernia? Is that MY daughter? Are they sure? As the doctor met us in front of Olivia’s incubator, he tried to explain what was happening and what the plan was. ECMO primed and ready. Olivia was on a special ventilator (called an oscillator). It gave her 180 breaths per minute. In addition to her CDH, she was born with two extra holes in her heart. Because of the combination of her heart and lung issues, she had what’s called pulmonary hypertension. Five days on the oscillator, four days on the regular ventilator, nitric oxide forever, echocardiograms everyday to every other day while she was there. As her guardian angle watched over her, she never needed ECMO. Her diaphragm was fixed on day three and was successful.
After one week, feeling like a lifetime for me, I was finally able to hold my precious peanut in my arms. A few days after that, I heard her cry. I was so grateful for those moments. It truly was a miracle for me. For the next few weeks, Olivia was weaning off medications, withdrawing from narcotics, and learning to eat. Finally, four weeks later, we took our Olivia home. It was my husband’s birthday.
Olivia is 2 ½ yrs. old now. After a few minor procedures (unrelated to CDH), occupational therapy and speech therapy, Olivia is a thriving, happy little girl who loves life. She is still a picky eater and probably will be forever. She is very independent, smart loves to dance and play, especially outside.
I still struggle with my experience. I cry if not everyday, I cry every other day. I cannot seem to get past the hurt and fear of heart-breaking experience. It still seems as if it was just yesterday. I cry for Olivia because of all she had to go through and overcome. A tiny little baby, weak in nature, but a soul so strong that she beat the odds. I thank God every single day for her. For keeping her here with us. She is such a joy in our lives. I will tell Olivia her story. She will know her fight for life, and how important and precious life really is. I will strive to teach her to be proud of herself and to tell her story to educate others. I do hope one of these days my tears and heartache will go away. I would like to close that chapter in my life. Not ever to forget, but to move forward.


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