Our Kids /
Emma and Jimmy
Emma & Jimmy
An MMA Journey from China to US
MMA, Mut 0
Our First Child Died
Caroline and I are very happy to wait for our daughter, Emma, to come. Every night, I told stories to Emma, though she is still in her mother’s body. One night, Caroline’s water broke. We sent her to hospital and the next day, we met Emma. We love her so much. She is beautiful, she is like an angel! I still remember that this moment is the happiest time in my life.
Then, on the seventh day, Emma was in coma. We cannot wake her up. We sent her to a children’s hospital in Beijing and then we learned there is too much bacterial in Emma’s blood. Even after a transfusion, doctors still cannot save her. She died, in her third week.
Our Second Child Faces the Same Problem
Doctors guess Emma’s death is a result of blood conflict between my blood B and Caroline’s blood O. After taking over 18 months’ Chinese medicine, our son, Jimmy was born. On the third day after his birth, he began to vomit. It was projectile vomit. Doctors took some blood sample from him and send Jimmy to NICU.
The second night, my mobile phone waked me up in 12pm. It is the call from NICU.
The doctor said, “Your son has MMA.”
“What is MMA?”
“I think you should go search on the internet yourself. But let me tell you first, it is not good.”
“Thank you! I will do it now.”
Doctors don’t think it is a good idea. A doctor told me privately, “I think you should give up this baby. You are very young. I think you can have a healthy one in the future.” “How to give up a baby?” “It is easy. Take your baby home and stop feeding him. When he dies, bring the body back, we can handle the rest.” “Thank you!”
I told myself, “I cannot murder my son. He is my son! He deserves the right to live!” My parents flew from Xi’an to Beijing; they still think the baby will be OK. They didn’t do any search on Internet. Finally, they decided to pick up Jimmy from hospital. My father’s first impression on Jimmy is “what an energetic baby, he is good.”
Jimmy is Like a Normal Baby
Yes, Jimmy was good after coming back from hospital. Caroline breast fed Jimmy and Jimmy sleeps well. My parents began to doubt Doctor’s diagnose. Everybody is happy about Jimmy. I was the only person still doing research on Internet. I thought this story is not going to be easy.
I found an online group in China. There are over 300 families registered in the group. I joined the group and began to share information. Their suggestion to Jimmy is, “Don’t be careless about MMA. You should talk to Doctor Yang. She is the specialist in this field.”
When Jimmy is one month old, we took him for the first MMA appointment. Doctor Yang think Jimmy needs B-12 injection twice a week and needs to start taking L-carnitine every day. She gave us an IV injection prescription and said, “When Jimmy’s acid level goes up, he will began to vomit, give him IV”.
We Couldn’t Stop His Vomit
I don’t think Jimmy will ever need IV, since Jimmy looks so good in the first 6 months. Then everything began to change. Jimmy start to vomit on his 9th month, but IV injections couldn’t stop his vomit.
From his 9th month to 2nd year, Jimmy vomited over 200 times. He got an IV injection right after his every vomit. Doctor Yang said, there is nothing we can do besides IV fluids. During that period of time, you can easily find needle holes in Jimmy’s hand, feet and forehead.
As a 30 lb. baby, he lost close to 8 lb. in several months. He was so thing and so fragile. Jimmy lied on my shoulder and is very weak. In order to calm Jimmy down, Caroline hold Jimmy all the time when Jimmy was having IV shot. After every shot, Jimmy began to vomit again, sometimes inside my car, sometimes on the bed, sometimes on our clothes. Our life was a mess.
A Letter to NIH
One night, Jimmy vomited again. All family began to clean his quilt, his clothes and Caroline’s cloth. After doing these, I began to search Internet for more information.
At about 2 am, Caroline wake up and asked me, “What are you still doing?”
“I think we should go to America for a medical check.”
“Is that even possible?”
“I am writing to a scientist in this field to see the possibility first.”
“Where is the scientist?”
“It is Dr. Venditti, in NIH.”
Out of my expectation, Dr. Venditti replied my mail and invited us to visit NIH when Jimmy is over 2. To most people in China, seeing doctors in USA is impossible. But we made it!
In April, 2013, we visited NIH for the first time. To us, NIH is like heaven. Jimmy can play in the Children’s Inn all day long and there are parties almost every evening.
After a series of medical examination on Jimmy, we learned Jimmy’s condition very well. Dr. Manoli gave us a lot of advice on how to balance Jimmy’s acid and how to feed Jimmy. With the proper medication, Jimmy develops in a very good health condition after coming back.
We Decided to Leave China
We got a new problem. MMA medicine and formula is very expensive. In China, medical insurance never cover the rare disease medication. Every month, our salary is only enough for Jimmy’s medicine and special formula.
I realized it could be a very big problem. Jimmy’s medical expense spent almost all our savings. The only property we still have is our house. If Jimmy needs kidney and liver transplant in China in the future, we will have to sell this house.
“Why not sell this house now and move to US”, I began thinking about this bold idea. By using Google, I learned, if I can build a successful business in US and hire a certain number of people, all my family can move to US and enjoy the medical benefit there.
After about 6 months preparation and paper work, we got visas from US embassy in Beijing.
Finally, we all moved to Philadelphia, to start our new life. No one knows what is ahead, but our family will stick together and give Jimmy the best life we can.
Eric and Caroline
Philadelphia, PA
zhangxinyan10188@gmail.com
From the Fall 2014 OAA Newsletter