Saturday, May 24, 2008

The Letter...and a weight off my shoulders!!

To Whom It May Concern:

I am writing this letter on behalf of my daughter Faith Patton. I feel that I need to do this so other families won’t have to go through the type of pressure we went through during our time in the NICU.

Our daughter, Faith Emily Patton, was born on November 2, 2007 around 6pm. She had problems instantly and was intubated upon delivery. She was having many seizures and the obstetrician who delivered her got the wheels in motion to have her transferred from our town to the town nearby for treatment.

The transport team came and they started the cooling process with Faith to lower the chances of more brain damage occurring. We are so grateful for what everyone did and how quickly things moved for Faith.

By 7am the next morning my husband and I got ready to make the trip, not knowing the situation we were coming into. We arrived, after talking with and making arrangements for our other children, around noon. We headed to the NICU and we saw that they were still working very hard on and for Faith. We sat in the parent room in the NICU and waited until they told us we could come out and see her. It was very hard to see her in the state that she was in and all those machines that were helping her with life…but, she was our daughter and we were going to be there for her, no matter what.

On Sunday November 4, we met with the social worker. She was very nice and she informed us that they did not expect Faith to survive the night. She was in such a bad state, with organ failure, heart problems, continuing seizures and brain damage…we were prepared for the worse and that was ok though it still hit us like a ton of bricks. It is not what we had planned for our family…

We have a very strong faith and believe in the power of prayer. We had sent out our prayer requests and there were churches and people in over 60 nations praying for Faith and for “faith”…We made sure that everyone knew that and we were believing in a healing for her.

We started having meetings with doctors and social workers, where they were telling us the possible outcomes of Faith’s birth trauma, and we just mostly listened. We chose not to talk about the bad things and believed for the future of our daughter’s life. Then it was the big decision day.

Faith had an MRI done and an EEG and probably many other tests, I cannot remember them all at this moment. We met with the neurologist that day, and he told us about her severe brain damage. It was a mirrored damage that would not be able to build bridges for her to do anything. We were told that we would start noticing changes in our daughter between 12 and 18 months.

Then we met with the nephrologists (kidney specialist), who went on to tell us about what was involved with dialysis, since she had kidney failure. He also told us that it bothered him quite a bit to perform dialysis on children who do not have a good “quality of life”, but he has also seen miracles, where children were not supposed to survive and they did.

We then met with our ethicist. She seemed to be a breath of fresh air at that first meeting. My husband had a hard time understanding the doctor, with his accent, and thought that it was great we would have someone there to talk to us in a way he could understand. She told us that she was there as a neutral person who was going to help us make any tough decisions we would need to make. She would help us understand what we could possibly be dealing with if we chose to keep our daughter alive and bring her home.

After we met with these people, we had what we now refer to as, the tag team meeting. It was very difficult to be in this meeting. This happened less than a week after Faith was born, on the Friday afternoon. My husband and I sat on the comfortable couch. We had, sitting in a semi-circle around us, the ethicist, and the head nurse, Faith’s nurse during that shift, the social worker, and the doctor. Very intimidating…

Then the meeting started. The doctor asked us what we understood of Faith’s condition. We repeated back everything that had been mentioned. We did understand her condition, and we chose to believe for a miracle.

The doctor then proceeded to tell us about all the conditions and that there wasn’t much progress being made. Then he stopped and the ethicist took her turn and told us what the possible outcomes were of these conditions. Then the doctor took his turn again and basically repeated what the ethicist said. We were looking at 5 major outcomes: mental retardation, cerebral palsy, blindness, deafness and seizures.

Then the ethicist took her turn again. She asked where we thought Faith would be in 2 years. I told her that I was not a fortune teller and nobody could possibly know that. We told them that she was being prayed for and we believed that our God was in control. We told them that we wanted everything medically possible done for our daughter. If everything was used and she died, then that was that…but we wanted every measure possible done for her.

This tag teaming went on 4 times, back and forth. Finally my husband lost it and yelled at them that we had made our decision and that was final. The ethicist then said that her “team” was having a hard time with the decision that we had come to…these words are ingrained in my memory…

This was the last meeting we had. We had 3 in total. The first one was with the doctor and we said that we wanted to keep her on the ventilator. The second meeting was because we were going to take out her tube, and if she went downhill, what did we want done. We obviously said to put it back in, which was done.

What this letter is about is the way that the ethicist handled the situation. If we weren’t as strong and as forceful as we had been, then we would not know the joy that our daughter has given to us. At the last growth and development clinic she was seen as being in the normal range for a 6 month old. We have also been told that if there was going to be a problem at 12-18 months, we would have seen the beginnings of that by now. All the therapists that we have here cannot believe the progress that she has made and they think she is such a joy.

What needs to be remembered is that the parents are the ones taking the child home. It is ultimately up to our moral compasses to decide what is ethical in our lives and what is not. Our ethicist did come back, after the weekend and she apologized for what happened in the meeting. She obviously knew that it was handled wrong. My question is, would there have been an apology if we had decided to make HER decision instead of ours?

I feel such a huge emotional sadness for the next family, and the next family, who have to deal with this type of pressure. I know, for us, if my husband had not been as strong as he was, I hate to imagine the decision that I would have made. I had just given birth, there were no foreseen problems, my world had just crashed, and I was starting the grieving process.

Faith, now 6 months old, has the most beautiful eyes that we have ever seen, she has no blindness whatsoever, and she has never had another seizure, since November 4th. She is not deaf; she hears us and responds to her 4 siblings. She loves music class and she loves to talk to us and sing with us at church. She is showing no signs of CP or mental retardation. She has a feeding tube at the moment but is eager when we offer her a cup or a spoon with food on it. We hope to celebrate her first birthday with a tube removal…

The best thing that describes our situation is when a friend from our church held her for the first time…he said that he had never held a miracle before. That is the truth and we continue to pray for her daily.

Please, make sure that you consider, when dealing with parents in our situation, that they have their own moral and value systems. They are capable of making decisions when they arise; they need to be given the support and understanding from their healthcare team. What happened to us should not happen to another family. Please remember to remain neutral in all situations. Opinions are okay but they should be just that, opinions. I do not force my beliefs and opinions on others, just as you should not either.

Finally, I want to just mention that we are so happy that our daughter was able to be helped. We are so happy that she finally came home with us. Everyone who looked after her and everything that was done for her was the utmost of care. We really would be down a whole different road if it weren’t for her nurses and doctors. There will always be a spot in our lives that we continue to be thankful for them and their commitment and devotion to others.

This was not intended to be a malicious letter in any way. I just wanted to voice my feelings and know that it will be discussed and new strategies will be implemented instead. This is not the whole story, just the parts that affected us regarding ethics.

Thank you so much for your time.

Ruth and Peter Patton
On behalf of Faith Patton…who is glad her parents made the right and ethical decision for her family.


  1. I take it from your title that this letter was a good thing to write!

    It is very well-written, Ruth. You are very clear and honest about what happened and how it made you feel. And it is a wonderful witness to what a miracle Faith is. I'm glad you wrote it and shared it with us!

  2. Wow Ruth....very well written. Reading this brought me to tears. But not sad tears! Tears of joy. Faith is such a beautiful and delightful child and I feel like a better person just given the opportunity to know her! You and Peter are wonderful parents and are raising such a wonderful family and its a pleasure to be around your kids. Justin and I love you all very much.

  3. My mom thinks you should send this to the paper and I agree!

  4. Hugs and blessings sent your way! My beautiful 13 year old daughter was a high-risk pregnancy and in the NICU for a while, too. From day one of diagnosis of high-risk pregnancy, we never faced doctors with negative outlooks--yes, we knew the chances of our baby not surviving, but we refused to face that possibility. Extreme measures were taken to try to help her survive, both before and after her birth. She DID survive, and she was OUR miracle baby, too! :) Later, it turned out that she did have a hearing loss--fitted with hearing aids and lots of speech therapy--grew to be a beautiful and healthy little girl who LOVED to talk! Now, as I watch her act like a completely normal and sometimes rebellious teenager, I remember those days when I prayed for her to survive. Our prayers were always that she be strong enough to make it through the tough times--now, when she shows her strong will and determination, we have to laugh and say, "We did pray that she would be strong, didn't we?"! She is a sweet and kind young woman, but she will always be strong enough to stand up for what SHE wants and believes in--good for her!! Babies who fight for their lives in the beginning often turn into strong adults who take on the challenges of life with a vengeance! More power to them! :)

  5. Wow... I am new here, so this seems like an impossible ordeal. I think you wrote a very important and much needed letter. I pray that it was received with as much care and concern as you put into the creation of it.

    Many blessings to you and your precious miracles-

  6. Wow , Sounds like you have been through a lot! Saying a prayer for you and Faith. I don't know what a lot of the things you are talking about are like. I have lost 2 full term babies though, and have one son still with us who has a heart condition, and a daughter that was born with clubed feet....(they are both doing well now)So I thank you for sharing all this! God bless you!

  7. Ruth, I enjoyed reading your post and I'm so sad and upset about those doctors and the "ethicist". Euthanasia is an ugly thing and it's still going on. Good for you! Faith is so lucky to have you for her family!

    About the "disability" label you mentioned in later posts, I understand what you mean, but it can be something that provides support and in fact there is a strong rights and pride movement for people living with CP or other issues. So the label can have positive outcomes...

  8. Hi Ruth, this kind of letter needs to be written--and sent!

    Our big NICU "meeting" didn't go as terribly as yours--there was just the creepily eager geneticist ... ;) But we were getting a different diagnosis, with a somewhat different range of expected outcomes. And as I type this, my son is twelve years old and playing nearby--CP, sure, seizures, yup, DD classification, that too--and he's also an amazing, awesome, wonderful, happy kid.

    It sounds like you as parents have the love to celebrate *whatever* happens for Faith. Our kids can take us so many more places than we ever expect to be, and with them we grow and learn. And maybe that's the real miracle, in the end.