My name is Shannon Payne Schron. My husband, Andrew, and I are parents to three year old twin girls and an eighteen month old son. On December 1, 2012, our son, Jake, was not feeling well and I rushed him to the emergency room because he was having trouble breathing. He had not been feeling well for a few weeks but his doctor felt it was a stomach virus. At the ER, they did a chest x-ray which discovered that his heart was enlarged and we got the shocking news that he was in congestive heart failure. We were told that Jake could not be treated at Staten Island University Hospital and was transferred immediately to Montefiore Medical Center in the Bronx. He has now been diagnosed with end-stage dilated cardiomyopathy, of which there is no cure. Within 48 hours, Jake was placed on the heart transplant list with A1 status. So now we have to wait until a suitable heart becomes available. We do not know how long that will take.
I am 34 years old and have been married for 5 years. I am a special education teacher with the NYC Board of Education at PS 373 on Henderson Avenue in Staten Island, NY. My husband is 36 and he is a para-professional with the NYC Board of Ed.Since we were married, we have experienced a lot of heart- ache. My husband, Andrew, had been battling Non-Hodgkins Lymphoma since before our marriage. Shortly after we were married, my husband relapsed again and the doctors determined that his best chance of survival was more rounds of chemo followed by a bone marrow transplant, once the cancer was in remission. Before his treatments began, my husband made a few trips to the sperm bank so we could have a chance for children in the future. Right before my husband's cancer treatments were to begin, we found out that I was pregnant, but I was having a lot of complications. During this time, my husband had begun his chemo and he had to remain in the hospital for four days every three weeks. In my 19th week of pregnancy, we found out that my placenta was abrupting and I lost our baby. I went into labor when my husband was undergoing chemo treatments and I had to deliver our baby girl by myself.
My husband finished his cancer treatment and in October of 2008, Andrew received his bone marrow transplant at Westchester Medical Center where he remained for several months. Since he could not work, I struggled to pay the bills on one salary. Andrew began to feel better and was able to return to work and in early 2009, we felt like we were ready to start our family. It took two rounds of in-vitro fertilization in order to get pregnant and we got the news that I was pregnant with twins.
Almost immediately, I began having complications again but I was fortunate to find a doctor who diagnosed my problem and with medication and constant monitoring, I was able to carry my babies for 7 nerve wracking months. On October 6, 2009, our two daughters, Courtney and Mackenzie were born 8 weeks early. Our girls remained in the NICU for 5 weeks until they were able to go home.
Right after we celebrated the twins' first birthday, we found out I was pregnant, which the doctors told us would never happen naturally. On May 19, 2011, our miracle baby boy Jake was born. Last November 2011, Andrew had to be hospitalized (at Westchester Medical Center) because he was having trouble breathing. I received a call from his nurse that I needed to get there quickly because they had to put my husband on a ventilator. When I got to the hospital, I found out that Andrew was on life support as his body was in septic shock and his organs were shutting down. A priest had given him his last rights and the doctors told me they did not give him much hope and I should think about funeral arrangements. Andrew proved the doctors wrong and improved little by little. He was able to come home from the hospital a few weeks later, but was unable to work for four months. Andrew continues to be hospitalized every now and then. Even though his cancer is in remission, he continues to struggle with graft versus host disease, which is a form of rejection.
Because of my difficult pregnancies and my husband's illnesses, I have exhausted all of my sick days. On December 5, 2012, I had to take an unpaid leave of absence from my job. I am worrying about paying the mortgage as well as our other monthly bills. My husband's salary has been and will be reduced because of all the sick time he has taken. His salary will not be sufficient to cover our bills.
Right now, I have to focus on my son’s health but I fear of the long-term financial hardship this will create. I’m afraid that we may not have a home to return to once Jake gets released from the hospital with his new heart.