A few days ago I was watching the midday news and heard about a 10-year little girl who is dying from Cystic Fibrosis who needed a lung transplant but no longer had to wait. A U.S. District Judge ruled she be added to the adult waiting list after her family had been fighting a rule that prevented children from receiving adult lungs. She remains on the priority list for a lung from a pediatric donor.
When I heard this, I was ecstatic, almost in tears. Children affect my heart in a way that is indescribable. They are defenseless and need love, support, and encouragement no matter what their diagnosis or non-diagnosis may be. They are a gift from God.
The 10-year old little girl named Sarah Murnaghan dying of Cystic Fibrosis had been on the list waiting for the past 18 months. The parents filed a lawsuit because they felt their daughter was being discriminated against by against the system that prevents children younger than 12 from receiving adult organs until after they’re offered to all adults and teens on the transplant list, even if the kids are sicker. Additionally, the children are placed at the back of the adult list and will have to wait.
Similarly, Javier Acosta age 11, also has Cystic Fibrosis and is in the same hospital as Sarah. His parents also filed a lawsuit requesting a federal judge add him to the adult list because he too is facing death soon without a donated organ. “Javier’s brother Jovan who was the same age died while waiting for a lung transplant two years ago. The family is now waiting for a hearing on a preliminary injunction that has been scheduled by the judge on June 14.” http://www.cbsnews.com/8301-204_162-57588078/dying-girl-added-to-adult-lung-transplant-waiting-list-boy-also-sues-to-be-added/
The Organ Procurement and Transplantation Network or OPTN policy rules notess children under 12 cannot be on the adult waiting list unless the doctor says they can be. Additionally, they have to go the back of the adult line which in the case of Sarah and other children who are in the same position can be a death sentence since they don’t have much time to live (see ca.msn.com link below).
The issue is now focused on discontinuation or policy changes for children under 12. Under the organ allocation regulation, pediatric transplant policies require pediatric wait lists for children under age 12. Pressure is being put on the allocation system to revisit and make changes to outdated policies. Yet, the changes will not occur in time enough to help the children who are going to die. They’re asking an exception be made for these types of cases.
There are two children right now fighting for their life and many others who are waiting for transplants of various kinds. But what disturbs me is that there are people who are insensitive and lack compassion because fairness and priorities have now become another issue.
News reports have identified statements of people saying these families are trying to jump the line. Others feel they are trying to skip ahead of those who are in just as much need for the transplants as they are. However the parents, who my heart goes out to, say they are not trying to jump ahead of anyone. They just want their child to have a fighting chance.
I say is that too much to ask? I don’t ever think it’s fair to count out hope especially when it involves children. To cause commotion and fight over something that can simply be overlooked when it’s a matter of saving a life is definitely beyond comprehension. The precious life of a child can be worth more than the selfishness and insensitivity of others who are being partial and unfair.
The good news, organ transplant experts will meet Monday to decide whether and how to change the rules for children after the filing of two successful lawsuits by Javier’s parents and Sarah’s parents to temporary lift restrictions who feel the Organ Procurement and Transportation Network or OPTN is unfair.
“Last Wednesday, U.S. District Court Judge Michael Baylson issued a temporary restraining order directing Health and Human Services Secretary Kathleen Sebelius to suspend existing organ allocation rules while OPTN considers a change.” http://news.ca.msn.com/top-stories/transplant-experts-to-debate-new-rules-for-kids
I believe children who suffer from any type of illness or any situation that jeopardizes their physical well-being need our prayers. I ask that we pray for the families and the children as well as those who have adopted the idea that it’s wrong to want what’s best for your child based on the fact that, as a parent we will do whatever it takes in the right manner to make sure the child’s needs are met and with God’s help they have a chance at life.
Pray for the parents too because life in itself is a hard battle to fight but to have to fight for quality of life in the life of a child can be a heavy burden to bear. We know God does not give us more than we can bear but will give us the strength to stand under and get through it.
Prayer changes things. A life saved is a life that can be lived abundantly.
Pray for the children.
Be blessed! -JD
- Dying girl intubated as she awaits lung transplant (foxnews.com)
- Transplant experts to debate new rules for kids (vitals.nbcnews.com)
- Second child files suit for lung transplant (vitals.nbcnews.com)
- Transplant experts agree to special consideration for kids (vitals.nbcnews.com)