Support Cameron’s CDH Journey
*** Today is March 6th. Today is 105 days the Perez Family has been hospitalized at Boston Children’s. Hospital life is emotionally, physically and financially draining. Josh has been out oof work since 11/20/2020. They also have a two year old at home in Connecticut. COVID has restricted their child care options as Cameron is extremely vulnerable. Last Tuesday they were preparing to finally go home and a routine X-ray disclosed that their precious baby is requiring a third surgery to repair his diaphragm. Instead of going home, they have to once again prepare to fight for their baby.
Please help us in supporting the Perez Family any way you’re able. At their routine 20 week ultrasound, their baby was diagnosed with a congenital diaphragmatic hernia (CDH). This is a rare condition that only 1 in 2500-3000 babies are diagnosed with. Basically, his diaphragm has a hole in it and this allowed his stomach, intestines and part of his liver to rise into his chest cavity. His heart is displaced all the way to his right side of his chest and his lungs cannot develop due to the stomach, intestines and liver resting on them. This family has a long road ahead. There are some things in life, that unfortunately, we can’t plan for either emotionally or financially, and a sick child is certainly one of them.
Jenn is temporarily relocating to a hotel in Boston to be closer The Brigham - Boston Children’s Hospital at 37 weeks pregnant (November 24), because her doctor fears the outcome if she goes into early labor as she did with Mason. Upon immediately delivery, Cameron requires special equipment for his survival. He will not make it if Jenn does not deliver at Brigham; the local hospitals are not equipped to deal with his rare condition. Other expenses will include travel expenses after Cameron is born, as he will spend months hospitalized, medical bills, and all other financial needs related to Cam’s CDH diagnosis to help keep this amazing family afloat. If you do not feel comfortable donating through GoFundMe, please reach out and an address will be provided to personally mail any donations.
Please take a few minutes to read a post written by Cam’s mother that was posted on his Facebook page (Cameron’s CDH Journey). https://www.facebook.com/Camerons-CDH-Journey-115075506992528/
“What does it feel like to have your unborn baby diagnosed with a potentially life threatening congenital birth defect?
Leading up to our twenty week anatomy scan (ultrasound), we had no idea anything was wrong with our baby; not even a slight inclination - no clue. My OB was super cautious with my pregnancy due to our many, many, many miscarriages and uterine surgeries. I had every blood test imaginable. Roughly ten minutes into the twenty week ultrasound, the tech got very quiet and teary eyed (we went over my history in great depth and I was outwardly VERY excited about my pregnancy). She touched my arm and said, “I’m sorry, this is not good for your baby. I’m going to get the doctor and I’ll be back.” I could hardly breathe. I was in shock. I was numb and alone as Josh couldn’t be with me because of the Covid restrictions. The tech finally came back into the room after what seemed like hours and told me that I should probably call my husband. I couldn’t move. I couldn’t function. How could I deliver more bad news to my husband? How could this be happening? This is my 9th, NINTH pregnancy. We can’t lose another. The doctor finally arrived and told me (and Josh on FaceTime) that our baby has a congenital diaphragmatic hernia (CDH). I had never heard of it. The only question I could ask was if my baby is going to die. His response was a very cold, “more likely now than if he didn’t have this diagnosis.” I don’t remember another word he said. Instead, I turned to Dr Google for information- BAD IDEA!! For a full week and a day I cried inconsolably and googled any information I could find. Nothing was positive, nothing, not a single word. I didn’t want to hear any of it. I had accepted our baby was most likely going to die, UNTIL; we met Dr. Buchmiller at Boston Children’s Hospital. She said his diagnosis was less than ideal but with the proper care and equipment, it’s not a death sentence. In fact, after a very long road, his survival rate is 90-95%. She went on to diagnose our son with a left sided CDH. His diaphragm never closed properly. The hole in it permitted his stomach, intestines, and part of his liver to rise into his chest cavity, pushing his heart all the way to the right side of his chest. This prevented his lungs from developing. A normal baby has 100 percent predicted lung volume (PPLV) . The average CDH baby has 15-35% PPLV. Cameron has 24% on the right side. They can’t see his left lung because his stomach is resting on it. At birth, he will go directly on life support until he is strong enough to undergo surgery to patch the hernia and move his organs into their proper place. From there, we begin a very long, slow road of building his lung strength, correcting pulmonary hypertension..... I could go on, basically it means months in the hospital and years and years of aftercare. Boston Children’s Hospital follows CDH patients through college as they are at risk for re-herniation and other complications.
We understand Cameron’s journey won’t be easy but we know it will be worth it. The day we can bring him home and introduce him to his big brother who is now 21 months will be the happiest day of our lives. Our family will finally be complete!
If you pray, please pray for Cameron. If you believe in positive thoughts, please include us. If you cross your fingers, please cross your fingers and toes for Cam. Thank you! ”