Tuesday, May 14, 2013

My Final Letter to Crouse

I would like to thank my dear friend Mariko for offering to help me get this letter written last year. This prompted my first draft (previously posted) where I basically tell my story about what happened inside Crouse. And she helped me form the layout and offered the idea of suggestions for Crouse for future cases. And I need to extend a big thank you to my sister Missy who took my first draft and made this inviting and polished final draft that I just sent out. I am very pleased with the outcome and look forward to hearing from them in the future.

Crouse Hospital
Attn: Patient & Guest Relations
736 Irving Avenue
Syracuse, NY13210

Dear members of the Crouse Hospital staff and administration,

I am writing to share with you my family’s experience in your NICU, from November 2, 2011 through November 7, 2011, in the hopes that an atmosphere of compassion may be seen as all-important and be placed by each employee in your facility as highly as the standard of healthcare you provide. They rank equally in any parent’s mind and should be given equal attention to maintain a professional, family-friendly institution that focuses on the personal health and well-being of each individual who comes through your doors seeking care.

Here is the story of our six days within your walls:

Just over a year ago, I gave birth to our third daughter, Ella. When she was born one of her lungs was not working. After a few hours in an oxygen tank in our local hospital, both lungs were working properly and we were allowed to take her to our room where we could hold her and share her with our family. Eight hours later our doctor came to us and suggested that we go to Crouse for further testing on Ella’s lungs. We were hesitant, but were reassured by Crouse’s staff that our daughter would be quickly released once testing was complete. They also assured us that no decisions would be made regarding Ella without our consent, as we were not allowed to ride in the ambulance with her.

Upon our arrival at Crouse it was very clear that our rights as parents were compromised. She already had an IV in that had "sugar water with electrolytes" in it, as the nurses told me, and an IV of antibiotics. Why were these being injected into my daughter before there was any sign of infection? We were furious, to say the least. The next six days of our lives went from bad to worse. That first evening I stayed in a local hotel to rest and recover from the birth while my husband stayed by our daughter's side through the night. He overheard many conversations with some not-so-professional nursing staff who spent the evening talking about dead babies and arguing over who had held the most.

Ella was in an oxygen tank for the first couple days, she was reading between a 96 and 99 most of the time. When she dropped below a 96 the bells would go off and the nurses would say, "She's leaving us, you might as well just walk away now. Save yourselves the torture." Are you kidding me? Do people really just walk away? Around day four we were told that A.) the oxygen sensor is inaccurate and B.) these numbers are perfectly normal for a full term baby. Ella was full term, actually a week overdue! Why was this never taken into consideration? We were also told she would never be able to hold her own body heat. She had no trouble maintaining her body heat on her own.

Your staff refused to let us hold our daughter and scared and threatened us with their uncompassionate remarks.

Whenever the hear rate monitor would drop we would rush to Ella’s side and pick her up to stimulate her while the staff gave us looks of pity and more remarks about this being “her last breath, prepare to say goodbye.” Later one knowledgeable staff member told us that for a full term baby in deep sleep, a dropping heart rate is perfectly normal; it was nothing to worry about. At this point we were very well aware that your staff was very insensitive, enjoyed scaring people, was not very educated as to interpretation of the monitors, and did not take each individual case into consideration. There were a couple times Ella had supposed apnea spells, but it likely wasn’t apnea only the dropping of these normal numbers.

We will never know for sure, but I pray no one will ever have to know the unsettling feeling of leaving their newborn in a facility of people where not only do they think her life should have been terminated but that her life is not worth living and that it's still not too late to terminate it.

In many ways Ella was treated like a preemie, which she was not. She was only allowed diaper changes every three hours. She was clearly irritable while lying in a wet diaper for hours on end. She was not even allowed to eat! On Friday (day 3), after the morning rounds, we came in to find Ella clothed and wrapped in a blanket, unplugged and in a regular bassinet. It was at this time that Dr. Bifano came to us with Ella's diagnosis. She had Trisomy 18, a rare chromosomal disorder. While telling us she stated that most of these babies are aborted and it was not to late for us to choose termination as this child would not live long and she would live a life of suffering. We were told she would probably have all sorts of internal problems, but no hospital would be willing to do surgery as she was labeled terminal at this point. She ended by saying that we were going to get linked up with hospice so that we could “leave and go home, where she would pass, if she didn't do so sooner.” We were baffled that a Dr. delivered this sort of news with the phrase, "It's not too late to choose termination." A loving parent couldn’t just walk away.

Never once were we offered any sort of comfort or any chance to speak with a professional to help with our grieving over the terminal diagnosis of Ella.

Finally that evening we had a nurse, Helen, who was willing to let us care for our daughter. Her motivation was that she also believed that Ella was not going to be going home with us, but it worked to ours, and Ella's benefit. Our child was finally able to eat! She was starved for the first four days of her life! I was discouraged from pumping my milk for Ella because "She probably had a blockage and would never be able to digest it anyway," as we were told. However I was persistent to do so, knowing that it was the best thing for her. And to get her off of the IV of both sugar water and antibiotics. Helen allowed us to start to feed our daughter breast milk through a feeding tube and Ella was visibly satisfied.

Up until this point she was clearly losing weight and, by the way, she was never once weighed during our visit. Her diapers, however, were weighed, and she had no problem wetting diapers, so we felt there would be no problem feeding her. After her first feeding she showed signs of irritability within an hour and as her parents we were excited; she clearly wanted more food. But the answer was no. Once again she was forced to stick to the preemie schedule of every three hours. Totally absurd! It was during this first "fit" that we found great comfort, our baby was finally getting the nourishment she had been needing, that any newborn would be lacking without. However your staff responded to us with: "This is what they do when they are ready to pass. You should prepare for goodbye."

We already knew better than to trust your staff, who had a history of being wrong. This tube feeding continued throughout the next few of hours, followed by her discontentment that we knew was from wet diapers and a desire for more of her mother's breast milk. It was this irritability that prompted Helen to set up a family day in the back room so that Ella's sisters could finally meet her, and “say goodbye to her.” We would be able to spend the day with her, free from the machines, holding her, loving her, kissing her -- with our family-- the way every baby should be loved. This was by far the best memory of our stay. After a couple of hours the staff asked us if we wanted to set up a room and stay in there with her since she probably wouldn't make it through the night. We refused, seeing and believing that she was only making progress and remembering that so many of your staff's accusations had been wrong.

On Sunday (day 5) we were able to change her and feed her as often as we felt necessary, what a great day that was! She showed so much contentment and comfort from that day forward. Things were finally looking up for us and we were set on going home. The nurse on Monday morning (the final day) said Ella had to pass the car seat test before we could leave. We gladly brought our car seat in and she felt Ella would not make the ride home, but she didn't want her to pass in the hospital, so we would not have to take the test after all. That was okay with us, one less obstacle.

During our six-day stay at Crouse, we spent much time in the waiting room. Here you have an informational kiosk where people can browse and read important facts and information. Two such facts state that it is very important for a newborn to receive their mother's breast milk and to be held to help them keep their temperature up, among other benefits. Ironically enough, those are two of the very things that Ella was denied under the nurses in your hospital, and we as her parents felt very strongly about. Also it is known that a newborn being held chest to chest with another human regulates heartbeat. Why were these simple, normal, methods of care not practiced here. You highlight the importance of it in one room and then don't practice it in another.

There were many inconsistencies we saw in regards to your mission statement (To promote employee and family wellness by providing resources and programs that will lead to happier and healthier lives.) and actual practices and procedures. In discussing our situation with other families, we found many unfortunate parallels.

Through all of this I learned so much about the infallible love of a mother for her child. Terminal label or not, kind words should always be spoken when one is most vulnerable and has little control over a situation. Fear should never be used as a motivator. Every time I drive by, I shed a tear at the sight of your hospital for the painful memories that were created there and for any other parent or child who was treated without empathy under your roof. I know that the fight we fought for Ella was the only thing that got us home.

Ella passed away a few weeks later in our home-- in my arms. My only regret is not being able to love her the way we wanted to right from the very start. We firmly believe Crouse hindered her by allowing her to drop 30% of her birth weight in the first six days of life. Through research I have found that your practices are similar to what most parents of children with chromosomal abnormalities face, and that the belief that these children face a life of suffering is completely false. The only suffering Ella ever endured was in your hospital, where she was unable to be held by those who loved her, was not fed, and was poked and prodded and laid on a flat table for days on end-- away from me, her mother-- usually with a soiled diaper. Ella passed peacefully in my arms while she was sleeping and I have great peace knowing that she was surrounded by love and warmth when she could no longer be with us.

My hope is that you have read our story with an open mind and an open heart. Whole-heartedly, I hope that in the future, your Neonatal Intensive Care Unit will align its polices and the training of its staff to place respect and dignity toward every human life-- at all times-- no matter how brief.

Please see the points and suggestions I have outlined below; I believe they are paramount to lasting improvement in the quality of care you provide:

1. We were led to believe no medical decisions would be made without our consent.
Suggestion: Parents and guardians should always be given informed, final decision-making power with regard to their child’s testing and treatment.

2. We watched our full-term baby receive, unjustifiable, preemie care and were unable to give her basic newborn care (diaper changes, holding, supplying breast milk…) as we had prior to her being admitted to Crouse.
Suggestion: Parents should be allowed and encouraged to care for their newborn in all ways that do not interfere with the medical care you provide.

3. A general lack of compassion, tact, and professionalism among your staff when addressing Ella and her care were pervasive.

Suggestion: Insist that nurses refrain from discussing “war stories” and comparisons of “dead babies” in front of patients and their families.

4. We were repeatedly given the suggestion to “walk away” and “terminate.”

Suggestion: Speak about the patient as though theirs is a valuable life, irrespective of diagnosis. And offer resources to parents and guardians to help them work through the difficulties of an abnormal beginning to life and of the possible death of their child.

May your attention to the comments and opinions I’ve shared allow others to experience the empathy and respect they so deeply desire and deserve within each room of your hospital and in the presence of each member of your staff. Thank you to your time and most importantly for your consideration in making Crouse Hospital a place where people can seek care in confidence and trust.


Maggie Phelps
Maggie Belknap

1 comment:

  1. Maggie, I am so incredibly sorry that this happened to you. Your message is powerful and I hope that it is taken seriously by the staff and administration of Crouse so that the situation will be changed for future families that will one day walk in your footsteps. You were already facing the unthinkable, and to know that your trial was exacerbated by such incompetence and lack of compassion is truly heartbreaking.