This is the letter that I have written to Crouse. I am currently working on editing this one and an outline to address specific situations, I will add that later. After we left there I promised myself that I would write them a letter about our experience in hopes that maybe just ONE doctor or nurse would reconsider their mannerisms when it comes to cases like ours. I plan on sending this letter to several offices in every level of that hospital, where they will be forced to read it and keep it on file. I understand that some people have had great experiences there, and that is wonderful. I am not taking away from that and it does not change my opinion about Crouse in the slightest. This is exactly the experience we had, and unfortunately over time I have forgotten the names of the few good nurses we encountered. I will keep you posted on any progress made and this is the least I can do for our daughter who's voice was never heard. This is part of my new mission in life and I will continue to fight for the rights of those who are told by "professionals" to terminate a child before or after birth. If anyone has any questions feel free to ask anything. Thanks ahead of time for reading our experience.
To whom it may concern,
I’m writing to share with you my family’s experience in your Neonatal Intensive Care Unit in the hopes that you will make genuine, lasting improvements, so that other families will not have similar experiences. In short, we were treated inhumanely. I believe the Neonatal Intensive Care Unit has a culture of disregard for caregivers as decision makers, and babies as humans. Upon further personal investigation of other family’s experiences in your facility, I found many unfortunate parallels. My hope is that you will read this letter, take it seriously, and address the points I have outlined below. I hope that in the future, your NICU will realign their staff, policies, and culture to practice respect and dignity towards every human life, no matter how brief. Our stay there began on November 2, 2011 and ended on November 7, 2011. My daughter's name is Ella and this is our story:
Last November I gave birth to my third daughter, and it should have been one of the happiest days of my life. Instead it turned into a nightmare that started and ended with your facility. When she was born one of her lungs was not working. She spent the first couple of hours of her life in an oxygen tank in our local hospital. Both lungs were working properly and a few hours later we were able to take her to our room where we could share her with our family and love on her.
Eight hours later our Doctor came to us and suggested we go to Crouse for further testing on Ella's lungs. At this point she was doing great and there was not a sense of urgency, but she recommended us to see what may have been the cause of her not breathing after being born and her lowered oxygen levels, something our local hospital was not capable of doing. Your staff met us at our local hospital and they forcefully pressured us to move to their facility. They went as far as to say that if we did not allow our daughter to go to Crouse for further testing then they would have CPS meet us at the door. This first threat of CPS lead me to believe that in some way "Crouse" would be advocating for our daughter, but we soon found out that nothing could be further from the truth. With much aggravation and contention we agreed. We were VERY clear with Crouse's staff, ALL of those present, that we were not comfortable with the decision to go, but we had agreed to the assurances by Crouse's staff that Ella would be quickly released to go with us to our home after testing. We signed paperwork, as did the Crouse staff, that said absolutely NO decisions were to be made regarding our daughter without our consent, as we were not allowed to ride in the ambulance with her. We were also told that we would be able to leave if and when we felt like Ella was ready to go to our home.
Upon our arrival at Crouse it was very clear that ALL of our rights as parents had been taken away from us and we had made the biggest mistake of our lives. She already had an IV in that had "sugar water with electrolytes" in it, as the nurses told me, and an IV of antibiotics. Did I mention she was eight hours old? We were furious, we had been lied to, we had no control. The next 6 days of our lives went from bad to worse. That evening I stayed in a local hotel to rest and recover while my husband stayed by my 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. The next day we met with your doctor's who lack any sort of morality and compassion for families with children in their care. It took me months to even go to that place in my mind to think about the words spoken to us.
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??? What is wrong with this operation? Around day 4 we were told that A- the oxygen sensor is the least accurate and B- those numbers are perfectly normal for a FULL TERM BABY! Ella was full term, actually a week over due, why was this never taken into consideration? We were also told she would "never" be able to hold her own body heat. This was an accusation made on a textbook, not on our specific case. Through her entire life she never had one problem holding her own body heat. We were refused to hold our own daughter and scared and threatened by your staff and machines who both lead us to believe lies. After we no longer let the oxygen numbers scare us, your staff moved on to the heart rate monitor. Whenever that would drop we would rush to her side and pick her up to stimulate her while the staff gave us looks of pity and more comments about this being her last breath, prepare to say goodbye. Later one knowledgeable staff member told us that for a FULL TERM baby that while they are in deep sleep, a dropping heart rate is perfectly normal, there was nothing to worry about. At this point we were very well aware that your staff was either very insensitive, they enjoyed scaring people, they were not very educated at all on either of these monitors themselves, or they didn't take each case into consideration. There were a couple times where she had apnea spells, but now we aren't so sure if it was apnea or just 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 who do not think their life is valuable or even hope that they will make it.
In many ways Ella was treated like a preemie, which she was not. She was only allowed every 3 hour diaper changes, when she was clearly irritable because she was laying in a wet diaper for hours on end. She was not even allowed to eat! On Friday, 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 very rare chromosomal disorder. She said her condition was "incompatible with life." While telling us this 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 labelled terminal at this point. She ended by saying that we were going to get hooked 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?????" How do you suspect that would make a parent feel? At this point we were ready to pack up and leave, only to be forced to be there for couple more days with the staff constantly telling us that "it was OK to walk away" and "would you like for us to set up an appointment for Now I Lay Me Down To Sleep?" Of course, like any loving parent, we declined every "chance" to just walk away and did these people really think that we would find comfort in them offering a photo session after our child took her last breath? It was then that we were forced to sign the DNR papers that had been thrown in our face so many times, so we could move forward with hospice, gaining grounds to go home. Never once were we offered any sort of comfort, any options to speak with a professional over the grieving for a terminal diagnosis, nothing.
Finally that evening we had a nurse, Helen, who was willing to let us do what we wanted with our daughter. Her motivation was that she also believed that our daughter 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!! In a hospital!! After I declined every proposition to not even think about pumping or letting Ella eat because "she probably had a blockage and would never be able to digest it anyway" I knew that the best thing for her was to get off of the IV of both sugar water and antibiotics. Why were these being injected into my daughter before there was any sign of an infection? This nurse allowed us to start to feed our daughter a small amount of breast milk through a feeding tube and she 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 dirtying diapers, so we felt there would be no problem feeding her right? 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 with our sweet Ella. This tube feeding continued throughout the next few of hours, followed by her discontentment that we knew was from dirty 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, unattached, 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 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 from the very beginning and remembering that all of your staff's accusations had been wrong.
We were excited that there was talk of us going home and finally we could leave that wretched place. When we returned to the main room the nurses told us that because we were from Cortland that our local hospice was not open during the weekend, this was Saturday, so we would have to wait until Monday to leave, and that was best case scenario. We took deep breaths and prayed for a miracle. The last two days we were still told it was not too late to walk away and that they wished they would have came to her diagnosis sooner so that they could "free up her bed." Angry and trying to refrain from being bitter we reminded them that we were ready to leave at any time, it was YOUR policy's keeping us there, so there was no more need to talk us like that. Saturday afternoon Dr. Gross came to us, casually sipping on his coffee and told us that we would have to choose a pediatrician from the hospital. My heart sank at the thought of ever having to come back to this place. I called my own Doctor/Pediatrician and she was more than happy to drive right up there and make it very clear to your staff that we would not be choosing a Pediatrician from your facility, but she would be Ella's primary care doctor. They finally agreed. It was at this time that we were told it was time to vaccinate our daughter, which we firmly refused. She has only had several ounces of breast milk in her body at this time, we were not ready to inject her with any more poison or poke her with any more needles, she and we had had enough. They told us that we should at least do the vitamin K shot, which we avidly refused as well, and we were once again threatened that CPS would meet us at the door. Their reasoning was "if she ever needed surgery she may need help with clotting of the blood." We reminded them that we were not going to be bullied into any more of your traditional routines, and that we were told she would be refused any future surgeries anyway. With nothing left to say, they walked away.
On Sunday night 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 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 either, so we would not have to take the test after all. That was OK with us, one less obstacle to get us out of there! During our 6 day stay at Crouse, we spent much time in the waiting room. Here you have an informational kiosk that people can look at and read up on important facts and information. Two such facts state that it is very importance for a newborn to receive their mother's breast milk and the importance of holding your newborn, one reason being to help them keep their temperature up. Ironically enough, those were two of the very things that Ella was refused 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 their mother is proven to regulate their heartbeat. Why were these simple, normal, instincts refused?? You highlight the importance of it in one room and don't even practice it in your own walls! What kind of place is this?
Through all of this I learned so so much about the medical community, standard procedures, and the infallible love of a mother for her child. Having a strong spiritual relationship with the Lord we were able to make it out of Crouse intact and not completely full of rage. But my heart is saddened for those who put their faith and hope in a medical community who prides themselves on inhumane practices that even the animal kingdom does not withhold from their young. Terminal label or not, such words should NEVER be spoken to another human being especially when one is most vulnerable and has no control. Fear should never be used as a motivator and I stand firmly on the fact that I, nor anyone in my family, will ever set foot in your facility ever again. I have nothing nice to say about our stay and cannot recommend your NICU to anyone. Every time I drive by I shed a tear for the painful memories that we have in that place and for any other parent or child who has mistreated and bullied under your roof. If not for my internal instinct to love my child regardless of a label and knowing there is more to life than what is seen, I would be very troubled for the rest of my days. I know that the fight we fought for Ella was the only thing that got us home and allowed for her progression. Ella passed away a few weeks later in our home, in my arms, and my only regret is not being able to love her and care for her the way we wanted to right from the very start. We firmly believe Crouse hindered her more than anything, allowing her to drop two full pounds in the first 6 days of her life. Through much 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 she ever endured was in the hospital, where she was refused to be held by those who loved her, refused to be fed, and was poked and prodded and laid on a flat table for days on end, away from her mother usually with a soiled diaper. Ella passed peacefully in my arms while she was sleeping and I have great peace about her time at home with us. I hope that your facility revises their "standard" practices in dealing with terminal situations. Since last November I have come in contact with a couple moms with newborns who were in Crouse who experienced the same treatment as we did. I am relieved to know we were not the only ones but sad to know that this is common practice. Please take this letter into consideration with future families and understand that these parents love their children and should only be encouraged and treated with the greatest empathy and compassion in their situations. Thank you for your time.