Mr. Parks and all Senior Editorial Staff,
I would like to take this opportunity to share some thoughts and commentary on the recent article that Mr. Parks published last week and the resulting correspondence between Mr. Parks and my wife, Kelly Ellis. As you know, Mr. Parks wrote an article last Thursday, April 17th regarding the "New Guidelines to Help Determine Premature Survival Rate". In response to the article my wife submitted an Opinion response to The News which was published in yesterday's paper. In all honesty, I figured that the debate would likely stop at that point, or at the very most we would receive a stock "thank you for your opinion" form letter from either Mr. Parks or The News editorial staff. Boy was I wrong!
What I share with you all is a truly heartless, cold, and disturbing response that smacks of an absolute disregard for humanity, not to mention my family. I hope that upon reading Mr. Parks' email response that you will be embarrassed that your fellow co-worker had the audacity to send such a response as an employee and ambassador of the Birmingham News. I find it interesting that Mr. Parks was not brave enough to courtesy copy any of his editorial staff or management to enlighten them to his private reply to my wife. I would also surmise that it is not routine or approved practice to address a reader in this manner without clearing such a response with an editor or member of management first. At this point, I am sure that you think that I am completely overreacting to a poorly thought out or hastily sent response by Mr. Parks. To give you all the necessary background to understand why I expect to receive a published written apology to my family and the other parents of extremely premature babies I ask you to indulge the rest of this email. This email will be quite lengthy; however, I hope that after you have finished reading you will see why my wife and I are so troubled by callous private response and the poor reflection that it has on the integrity of the staff at the Birmingham News.
In early July 2007 my wife was passing the halfway point of her third pregnancy feeling great and on her way to a healthy third trimester. Our first baby was lost to a miscarriage early in the second trimester. Our second pregnancy (first daughter) was delivered at 30 weeks due to complications with pre-eclampsia. As a result of the various complications that my wife faced during the first two pregnancies our doctors monitored her very closely during her third pregnancy. On Friday evening July 20, 2007 my wife began complaining of excess swelling and decided that the doctors should be called. As a measure of precaution the doctors admitted my wife to Brookwood Hospital for observation. By mid day the following day we were informed that she was again experiencing the onset of pre-ecclampsia and that since she was just past halfway in her pregnancy the doctors were going to keep her in the hospital as long as possible to allow for further development of our daughter. At this point we were introduced to the neonatology team and given all of the knowledge and common statistics regarding the viability of life at various gestational stages. We were informed that at 22 weeks that there was little hope for survival, and that at 23 & 24 weeks there was a slightly increased chance of survival but that survival would likely be accompanied by lifelong and very serious health risks. We were also informed that at 22-24 weeks gestation that the methods and practices required to help a child survive could be difficult, painful, and potentially result in more damage to the child. We certainly were given the opposite side of the spectrum as well and informed that we could likely be faced with making the decision to allow our child to pass if the potential for survival was decreasing. The interesting part in all of the discussions that were had in that first 24 hour period is that never did any of the doctors or nurses give us the slightest impression that at barely 23 weeks gestation, our child was not going to be given the absolute greatest chance and care to promote survival even given the grim and doubtful future that faced her. There was never a second that I felt that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on a "risky" and likely "fruitless" efforts.
On July 25, 2007 at 24 weeks gestation our second daughter Kathryn was born. She was 11 inches and 14 ounces at birth. Immediately following birth she was rushed to the NICU and immediately ventilated and placed into an incubator where she would stay until late December 2007. I will tell you that 11 inches and 14 ounces may not resonate in words, but as a man, and as a father I have neven been so scared, fearful, and humbled in my life as the first second I saw my youngest daughter. All of the bad decisions and wasted moments of my life to that second flashed before my eyes. I was immediately terrified that there was something that I had done in my life to cause my daughter to be born into this world in such a fragile and completely unprepared way. As soon as my wife was recovered enough to talk with the doctors they were careful to inform us that she was very pre-mature and was what they termed micro-preemie. Her chances of survival were minimal, and that there were enormous obstacles she would have to overcome from that day forward to give indication as to whether she would survive and in what state if she did. Again however even at the depth of our confidence level there was not a second that I sensed that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on a "risky" and likely "fruitless" efforts.
As the days and weeks progressed were given small amounts of hope from the hospital that while things were not necessarily improving, but that our daughter was surviving. She was receiving countless dollars worth of x-rays, CT scans, bloodwork, ventilation, therapy, medications, not to mention the 24/7 monitoring and attention by the NICU staff. She was receiving expert consultation from doctors at UAB and Childrens Hospital as well. All of this costing ridiculous amounts of money and time by the healthcare system. All for one single 14 ounce "risky" and likely "unviable" life. All of this was until late August 2007 when we were called by the doctors and informed that our daughter was experiencing some complications and there was concern for her life. My wife and I were again taken to the brink of a decision we did not want to make. The concept or notion that one night could potentially bring us to a decision point to proceed with treatment or whether to stop was suddenly upon us. As that night went on the doctors came to us and informed us that all the efforts they were attempting were not working and that they were running out of options. They asked us to talk to them, pray with them, and to brainstorm with them what to do next. I remember in the early morning hours my wife and I walking back in to the NICU to check on our daughter and seeing the incubator lid raised for the first time in her short life exposing her to outside air. This immediately scared us thinking that there was another downturn and that the decision was upon us. Amazingly, every single nurse and doctor on call in that NICU was around our daughter carrying on normal conversation, laughing, and crying because it seemed that the only thing that was causing our daughter's vital signs to stabilize were the sounds of life going on around her. At this point in my life I knew that while medical science was allowing my daughter to "survive" and improve her viability in this world, it was pure human compassion and caring and God's divine grace that was allowing her to "LIVE". Yet again there was never a second that I felt that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on "risky" or "fruitless" efforts.
From the time we entered the NICU with our daughter we were asked to approve countless procedures and tests to be performed on our daughter. She suffered from infections, required potentially damaging steroid treatments, and was temporarily medically paralyzed for three weeks to allow her body to recover and heal. All of these had drastic and disfiguring affects on her body. She lost tips of fingers and toes due to lack of blood flow, and was swollen immensely due to paralyzation, all of these things were particularly difficult to see as a parent and even more difficult to impose upon your child. However in her best interest and at the advise of her doctors these were the treatments that were needed. Again all of these procedures were being done for a "risky" and likely "fruitless" life and likely taking valuable medical attention from someone else who was much more "deserving".
Finally, in late December 2007 our daughter was released to come home for the first time in her life. For the first five months in the NICU our daughter likely cost the healthcare system approximately $2-3 million dollars and untold man-hours of medical staff time. Since December she has returned to Children's Hospital for two additional 2-4 week long admissions due to complications which have likely cost the healthcare system another $1 million dollars and more man-hours of medical staff time. Additionally I would like to make you aware that both times we were readmitted to Children's Hospital there were massive amounts of time and sometimes days to get into a room because the hospital was booked solid. The interesting part is that because my family has experienced the benefits of the millions of dollars of medical time and research I don't remember complaining about having to wait for a room while another "risky" child was being attended to by more "fruitless" medical technology.
I will say that I am honest enough to admit to the world that I am 100% selfish and 100% human and I feel like my child deserved every fighting chance that was afforded to her to survive. I will also say that I do not consider myself to be more deserving than anyone else nor my child to be more deserving than any other child. I am appalled to think that Mr. Parks is equating a child's life to a "business decision" based on which children offer the greatest return on investment. I cannot imagine if I were a doctor having to make that "business decision" as to which children deserve the benefit of our healthcare system. I assume based on Mr. Park's logic that allocation of healthcare resources is purely business driven decision then his next article should be based on study related guidelines for when to advise families to terminate care for cancer patients, AIDS patients, stroke victims, or the elderly. I guess Mr. Park's pointing out to us that if there is a point at which life and the viability of life become a decreased potential for the healthcare system to make a profit then doctors and researchers will continue to come up with guidelines to help set the boundaries so we will all know when to throw in the towel on a life!
Last but not least, I am particularly insulted by Mr. Parks last statement "I certainly am glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. I pray that God continues to bless her." In case you can't tell from my email I am forever grateful to the doctors, nurses, administrators, researchers, and anyone else that directly or indirectly cared for my daughter and brought her home to our family. If you can't tell as well I am also fully aware of the amount of money and effort that it has cost to bring our daughter home, and I am forever grateful as well. But do not have the audacity to throw that in to justify in some deranged backhanded way your argument for making life or death decisions based solely on which babies you feel worthy of the care. If you said what you really meant to say then it would have gone something like this... "I am certainly glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. Because had your child had not lived then I as a member of society would be sending you a bill for the money, effort, and care that we as a society extended to your child that was taking time away from another more deserving child".
Mr. Parks your original article was essentially a piece that outlined widely known information that many neonatologists have been using for quite some time. Our family was given much if not all of the information that these new "guidelines" state. In the end our family in consultation with our doctors and God made the only choice available to us which was to take every chance possible to preserve the life of our daughter. I still agree with my wife's original Opinion that the research data is there to provide information and educate, but is too dangerous for our society to use as a "guideline" to determine life or death. I do not know if you have been faced in your life with the decision to care for the well-being of a dying or struggling loved one. I do not know whether you are a parent or not. I would guess by your email to my wife that you are not a parent and have likely not had a significant experience in your life that requires decisions that can determine if life continues or not. Either way, it is not my place to assume, simply to point out that if in fact you have then I am not sure what wisdom it granted you otherwise your comments might have been more humane. In the end I hope that you see my perspective and now fully understand the level of disgust I have with your email to my wife. I would expect a reply from yourself or anyone that receives this email in the editorial staff. I would also hope that the News as a whole has the integrity to stand up and admit when a writer has overstepped the bounds of decency and has insulted a reader to the degree that I hope you all now understand and can respect.