Barbara's Story
I had a still born daughter in 2001, delivered my first son in 2005, and had three miscarriages (all between 4-5 months) over the next four years. Every loss was more difficult than the last. Doctors couldn't figure out what kept happening. All of the testing they did came back normal. Everything indicated I should be having healthy, successful pregnancies. I didn't know if I could bear to loose anymore children. In early 2010, I became pregnant with my sixth child. The pregnancy was touch and go. At 26 weeks I went to the hospital one more time. This time I hadn't felt baby movement in a few days. My husband and I figured it was probably just another "routine" visit, so I drove myself to the local maternity hospital. I could tell after the nurse did my triage this wasn't the typical visit. The doctor was in my room moments after I had been admitted. After about two minutes of an ultrasound he left. There was only a curtain, rather than a door. I could hear the doctor on the phone and talking to the nurse. All I clearly understood was "prep the O.R. Immediately" and "bed 5 needs to be prepped". My heart sank. I was in bed 5. I didn't know what was wrong, I didn't understand why I was going to surgery again. A months before, I had to have a very dangerous surgery performed to remove my appendix. The doctor came back in. I didn't give him time to tell me I was going to surgery. I blurted out "WHAT IS WRONG!" He looked at me with a look of pure sympathy. I knew then, it was the baby this time. He told me that I was going to be having an emergency C-section because my placenta and uterus had collapsed on the baby and he was going to die. I called my husband, somehow managed to convey something was wrong and our child was being born that night. I lost so much blood I flat lined on the table and don't remember many hours after that. I was barely coming to in ICU when I realized my husband was talking to a nurse at the nurses station. I couldn't talk as I had a breathing tube down my throat. I heard the nurse tell him "we've done all we can do. If she is going to make it through the night, it is going to be up to her". All I could think was I can't die! Not now! Not yet! I pulled through and later that night (actually probably around 3am the next morning) I woke up. My husband was there. I asked him if the baby was ok and he said he was. I can only imagine what my husband went through arriving at the hospital, thinking you've lost your infant, and then being told your wife might not make it. Once I was fully stable the doctor released me to critical care. On the way to my room we stopped by NICU and I met my son. Things were bad but the prognosis was
good. The next day things got worse. About mid morning I got a call in my room from my son's doctor. "We will need you to make a decision as to whether or not we will continue life support". For the third time in 12 hours my heart dropped out of my chest. I called my husband who was moving us to a new apartment, we had to be out. I explained what the doctor said. We spoke to the doctor. Begged for an alternative. He said there were a few treatments and test they could try, but he wasn't hopeful. We decided if things continued to be bad or get worse we would say goodbye to our son in two days. Those three days were the hardest days I have ever faced. We didn't understand, it wasn't fair. Why did everyone else get have keep their babies and mine kept getting taken away. The night I said goodbye to my son was the most angry, hurt, confused, and depressed I have ever been. My son's doctor wanted to perform an autopsy. He told us he suspected he knew what was happening. Three months after my son passed I got the news, I have a rare disease called neonatal hemochromatosis. The basic definition was my body was killing my babies. I was devastated. I didn't know what I was going to do. Two weeks after that phone call, I found out I was pregnant again. I called my son's doctor. I was scared and didn't know who else to call. He gave me the best news I could imagine. "There is a treatment and you can have a successful pregnancy". Thanks to loosing my son I have my seventh child (second living). You see, evidence that the mother has NH can only be found in the liver of the infant. In order to run the specific test needed the baby has to have passed as a neonate. Though I wish I never had to go through loosing my son, I understand why. God needed a couple of things to happen. He needed my husband and I to become a stronger united couple, something we did over the time of the pregnancy and kissing our son. We learned to rely on each other. God also needed us and my doctors to know about this disease in my body. The thing is God knew he was about to give us an amazing, though trying, blessing. He gave us our Monkey. I say he is trying, not because if his personality or his behavior, but because Monkey has multiple defects with his heart and kidneys. Monkey is now two and has had three open heart surgeries and two kidney surgeries. I fight right alongside my little man every day. I wish I could say one day he will not know a life filled with doctors and surgeries but that will never be the case the surgeries manage his defects of which there is no known cure for.
Warrior Story written by Barbara Amos in her own words
On August 12, 2009 my son John Anthony was born in Germany due to his dad being stationed there. My entire pregnancy we were told that we were having a perfectly healthy child. At birth we noticed that he did not have a right ear, it was completely shut where his ear should have been, we instantly new something was wrong but never expected how things really were. When he was 2 weeks old his Genetic testing came back and he was diagnosed with Cri du Chat Syndrome which is a very rare syndrome. In November he became very sick with Pneumonia, Doctors both Military and German did not believe that he could survive this Pneumonia and John and I returned to Los Angeles, CA to seek better healthcare and a slight possibility of him surviving. We arrived in CA a week before Christmas 2009. In January I took him to the ER because the Pneumonia returned, he was then transferred to Loma Linda Children's Hospital which was a better equipped hospital. His dad was sent on Emergency Leave to be by his bedside as his future was unknown. John was taken to surgery to correct an obstruction in his airway but the surgery failed and they had to place a tracheostomy for him to be able to breathe, his father had to return to Germany within 12 hours of the surgery while John was still in a coma. On our way to the airport we got a phone call that his condition had worsened and they had to do 2 emergency blood transfusions. At this point John was 5 months and only weighed 5.7lbs so he was a very fragile little boy. A feeding tube was place shortly after. during 2010 John spent about 90% of the time in the hospital. 
