My name is Jim Hollinshead and I live in St. Louis with , Missouri, USA, with my wife of eighteen years, Elly.  We are recovering from the loss of our seven year old daughter, Annie, the joy and inspiration of our life.

A diaphragmatic hernia is a birth defect, which is an abnormality that occurs before birth as a fetus is forming in the mother's uterus. An opening is present in the diaphragm (the muscle that separates the chest cavity from the abdominal cavity). With this type of birth defect, some of the organs that are normally found in the abdomen move up into the chest cavity through this abnormal opening and prohibit normal development of the lungs.

Annie's case was worse that anyone could have imagined and she narrowly survived at birth and a 13 day stay on the ECMO Machine.

Defined:  Extracorporeal membrane oxygenation (ECMO) is a special procedure that uses an artificial heart-lung machine to take over the work of the lungs (and sometimes also the heart).  In newborns, ECMO is used to support or replace an infant's undeveloped or failing lungs by providing oxygen and removing carbon dioxide waste products so the lungs can rest.

After thirteen harrowing days on ECMO, which included the high risk, surgical repair of the herniated diaphragm and two failed "weans" from the ECMO machine, the attending doctor in the Pediatric Intensive Care Unit took us aside and told us "It is time to turn the machine off.  There is nothing left we can do for your baby..."  As the Nurse Specialist began to dial down the ECMO Machine (it took hours, not minutes) Annie shocked all in attendance when she LIVED and didn't die.  This was the beginning of the inspiring life story of Annie Hollinshead, a tiny child who was raised from a deathbed by the Miracle Power of the Living God, and through the skilled care of the Medical Professionals from Washington University School of Medicine and St. Louis Children's Hospital.

Annie's unexpected, wean from the ECMO machine was followed by a medical first.  At the age of just three months, and, fighting for her life in the NICU against the unrelenting onset of Pulmonary Hypertension, Annie underwent a life saving, bi-lateral (double) lung transplant. *Annie's case is widely considered the only one of its kind in the world's medical experience, as corroborated by our esteemed friend and world renowned neonatologist, Dr. F. Sessions Cole, Chief Medical Officer of St. Louis Children's Hospital, Associate Vice Chancellor for Children's Affairs at Washington University School of Medicince-St. Louis, Harrison Ford look-alike, and, Annie's CFD, or, Chief Favorite Doctor, a distinguished, and highly esteemed society of Annie's "A" List doctors. 

To be honest, life after a pediatric lung transplant is no picnic for the child nor the parents.  The surgeon who successfully excised Annie's diseased lungs and fitted the donor organs into her tiny chest cavity predicted as much after emerging from the ten hour transplant surgery.  His grim prediction hit us hard;   "Remember you guys, transplant is not a curative procedure;  these lungs I just put in your daughter will probably last about five years.  You see, Annie took potent drugs on a daily basis  that suppressed her immune system, thus tricking it into not attacking and rejecting the donor lungs.  Balancing this powerful mix of drugs and their effect on other organs (especially the kidneys) is a difficult science. 

Annie also lost all of her hearing as an after-affect of receiving mega doses antibiotics during her first days in this world.  Deafness is a very, very big hurdle to overcome;  Annie did it!  With the help of a Cochlear Implant, sign language, and hard work.  As a father, I waited until Annie was seven years old to be called Daddy for the first time... 

Ultimately, Annie's lungs lasted seven and a half years.  That's fifty percent more than the average!  We lived those days to the full with Annie and spoiled her rotten! A bad chest X Ray was the first indicaton that Annie's lungs had run their course.  Not long after, she began struggling to breathe, and, a 911 distress call landed Annie back to the Intensive Care Unit at Children's Hospital.

From there, Annie fought a courageous, fifty day battle in the PICU at St. Louis Children's Hospital, beginning in February 2007 and her lungs ultimately failed.  They were simply ravaged by Bronchiolitis Obliterans, or, the obliteration of the small airways, a fate that takes the lives of many lung transplant recipients.  Annie was listed for a second transplant during her final hospital stay, but, that wasn't in the cards.   On Easter Sunday, 2007, Annie slipped out of her body and headed straight to her Creator.   As her pulmonologist, Dr. Stuart Sweet said, "you aren't losing Annie, you are setting her free."  And free Annie is.  In Heaven.  In the Glory of God.  For sure having lots of fun and playing and running, but, also speaking for the first time, and, not in pain and not struggling to breathe.  It must be wonderful.

The death of one's only child is the heartbreak beyond compare;  especially Annie.  She fought so hard.  She defied and overcame tremendous obstacles in her life;  always with a smile on her face and with a strong and determined spirit.  She was the real deal.  We miss Annie so badly and we long to be re-united with her.  At times, the pain is simply unbearable and seemingly impossible to describe. Yet, one day at a time, with the help of so many caring and loving people, we are surviving. 

Yes;  the wounds are large and very raw and re-discovering the meaning of life and living is very elusive. I wish we could paint a prettier picture, but, I am compelled to tell it like it really is.  Every day is an opportunity to walk by faith (with The Word of God fueling us) and people encouraging and praying for us, and, it is hard.  In one sense, I wouldn't wish our life on anyone, yet, in still another sense, I wouldn't trade what we had, what we have, and, what is still to come, for a trillion dollars! 

Would we have done anything differently if offered a second chance?  Nope.  We only get one pass at this thing called life and we have ZERO regrets.  We left everything on the field.  Annie finished her race and passed into a better place and one day we will step into the same reward. 

Thanks for visiting with us.  We are honored to be a part of the Beliefnet Community. 

Annie's Mom and Dad