She Has Fingers

As I'm sitting down to type this out, my stomach is already lurching. Anytime I actually have to think it all out and try to put it to words, my whole digestive system flares up angrilly. We left for Gainesville early in the morning of October 6th. Our first appointment that day was with Dr Richards (and his technicians) and the ultrasounds they performed took over two hours. The first technician was really very sweet - she would explain everything she was looking at during the ultrasound and was happy to point out that Beckett has fingers and toes and does not, in fact, have clubbed limbs. She even printed a little picture of five fingers waving at us and typed "Hi Mom And Dad!" on the sheet. When she scanned Beckett's face, I was horrified. She has a bilateral cleft palate, which means both nostrils flare down into an opening that leaves the entire top portion of her mouth agape. She has no top jaw to speak of. Just the tip of her nose and then nothing. The picture reminded me of a lion's face, so she imeediately became our little 'kitten'.

The second ultrasound was performed by Dr Richards himself. With him was a team consisting of a medical student and a resident who had been researching Beckett's strange case. The long hours were filled with medical jargon and terminology that we couldn't understand. They measured in depth the size of each of her organs, her brains, certain veins, ventricles and other various tidbits that we couldn't keep track of. There were two separate types of ultrasounds, and 'invasive' does not begin to describe the sort of procedures they were.

He sat down with us after speaking with his team and calmly made a list. One side of the list said "Things we like". It contained "Fingers", "Toes", "Kidneys"... not much else. The second side of the list said "Things we don't like." It filled the paper. He told us that she had Hydrocephalus, which is water on the brain. He also said that she was no normal case though, and that her brain was almost entirely fluid. The brain tissue was minimal - no more than a sliver against one wall. The diagrams he drew were pitiful. He said it meant she had a syndrome called "Dandy Walker". Her brain would not sustain much activity.

Her Diaphgragmatic hernia was not normal either, he explained. Her bowels, stomach, gall bladder and part of her liver were pushed into her chest, leaving one lung tiny and malformed with the other not even present. Her heart has a small malformation somewhere in the septem, but it wasn't anything life threatening. He then sent us on our way and we had to wait several hours before our second appointment with the pediatric surgeon.

We spent the time visiting the museum of natural history there on the campus of UF. We also strolled through the museum of art, had lunch at the cafe and cried over our meals. It was a beautiful setting. Butterflies floated all around, lizards sprang back and forth and large koi ponds were raised in geometric shapes to provide an artsy getaway for the college students. Everything was just too pretty and serene. I was mad at it for looking so normal. I was literally angry that the world was continuing to be just as great and stimulating while my baby was continuing her malformed struggle into creation. She was not pristine or perfect and how dare anything be sunny or gorgeous on a day like that.

When we entered the children's ward for our appointment, it hit us. There were sick children everywhere. Boys in wheelchairs, bald from their battles with cancer. Little girls with MS, laid back in strollers and drooling at their absent-minded mothers. The one that really got to Phil was a little boy I hadn't seen - an obviously mentally handicapped child in a wheelchair with one of his legs turned backward. Phil was actually fine with the sight until the boy started to cry, a pathetic little sound of desperation, and he could no longer take it. We were both miserable messes, crying and wiping futilly at tears we couldn't make go away.

The nurses finally took us back and started my vitals. The first asked quietly how I was doing and they passed my paperwork back and forth. They were all staring at me sadly and I knew that was a bad sign. These women deal with sick, terminally ill children every day, and they were taking pity on me. I held my breath. They moved us into a private room to wait for Dr Kayes and on the ceiling were hand-painted tiles from children who had stayed at the facility. One finger-drawn piece said "It may be hard, it may be rough, but you can do it! I know you can!" I lost it. I bawled and shrunk and clutched myself so tightly I thought I would suffocate. We were left alone for a long time in that room and I managed to straighten up enough to be polite when Dr Kayes finally came in.

He was friendly and looked us straight in the eye. He didn't start with anything medical. He asked us how long we had been married, what our other children were named and what they were like. He said he liked to get to know all of his families and he cared very much for each case he worked with. He referred to Beckett as "your little girl" and skirted around the issue of her brain for nearly a half hour. We talked about her lip and the plastic surgeries that would ensue We discussed the severity of her hernia and the size of her lungs. He has about thirty cases a year of Diaphragmatic Hernias, and in his experience, babies with lungs smaller than a .9 don't survive any kind of surgery. Beckett's lungs are a .6 but we still hadn't lost hope.

The details about the surgery to correct her diaphragm included a machine called the ECMO, which would circulate her blood outside of her body to make sure she stayed oxygenated. The problem with this procedure is that they have to remove the blood from her throat and replace it into a vein in her brain. In normal cases, children with fully developed brains have severe defects due to the procedure and end up retarded. A case like Beckett's, where she has only a sliver of brain tissue and little activity, would mean total degradation of her brain, leading to a vegetative state.  She would be, more or less, braindead after the surgery. They would not perform the surgery on someone who was not technically 'alive'. That was the part we were dreading.

He said the only treatment they would give her, if any, was ventilation to keep her organs alive. She would eventually have to be removed from life support and would, in essence, have to be killed off.

Explaining the process of birth to us, we learned that children that young have no concept of struggle, pain or any other learned function. She would not struggle very hard to breathe during birth because she wouldn't know what it was, since she has no lung function. She would feel no pain and have no understanding of what was happening.  If we put her on ventilation, she would learn what it was to breathe, eventually develop feeling and would suffer if we removed her from the machine.

She has no chance of survival at this point. The specialists are interested in what sort of "Dandy Walker" she has and would like to do additional testing, including an MRI on both me an the baby. The tests are simply educational though, and provide no idea or hope for a different prognosis. She is going to die - it's just up to us whether she suffers or not.

We've decided not to put her on ventilators. When she's ready to be born, we'll let it happen naturally and we'll hold her for the few short moments she's alive. We'll cradle her and tell her how much we love her, keep her warm and close to us until she's ready to go. The Drs said she wouldn't last more than ten minutes, and to be quite honest, they dont expect her to last more than two once she's out of the womb.

Hearing that she wouldn't be able to breathe (because she doesn't have the capacity), scared the hell out of me. All I kept imagining was a fish out of it's tank, flailing on the ground, gasping for breath. Dr Kayes was very patient with explaining that she won't be struggling like that and that it's most important to make sure she knows she's safe and loved with the little time she has. I couldn't breath while he was talking. I sat there heaving, chipping out these fractures of words I couldn't completely form, trying to make some intelligible question come out of my mouth. In a moment of stark reality, he said, "It sucks, and I'm so sorry."

He sat with us a long time, reiterating what could and could not be done. There's no medical procedure that can help her in any way. Any sort of treatment would prolong her struggle and end up injuring her and putting her in pain. I wasn't going to see my baby suffer anymore.

We'll be delivering here in town, where they have no capacity to assist her. She'll be birthed, placed directly in my arms and will stay there until we hand her over to have her body prepared. Phillip expressed his worry about being able to handle holding her, and I told him he wouldn't have to. I doubt I'll be able to let her go once I have her. She'll only be with us for a short span of time, but that will be the most important time we've ever spent with anyone.

Now comes the finalization of plans. We've discussed open or closed caskets - Phil prefers closed so that whomever is at the funeral will not gawk or be disturbed by the massive malformation of her face.m (the following link shows a rather gruesome explanation of what a cleft lip is. Beckett's is bilateral, meaning both sides. Don't click if you're easily disturbed. I'm seriously warning you, but for those of you who are curious, click here ) I prefer open - I want to see her before she's taken from me for a final time. I want to cling to what she looks like, because I know once she's in the ground, I'll start to forget. We've decided to bury her with the blanket that Auntie Cindy made for her.  We have the cakset picked, the flowers picked.. we still need a location and a way to pay for everything.

I'm very cynical right now and I'm not handling things the way I should be. When my mother told me that someone said to her, "She'll be an angel in heaven", I didn't want to hear it.  I really don't want to listen about how wonderful heaven is going to be for her. She's going to be a great help to someone right here on earth. Her only really viable organs are her kidneys, so we will most likely be donating them to Shands, in Gainesville. There are many children waiting for organs, who's lives depend on receiving them, and Beckett can help. She's coming to make sure that some other baby, who's just a little bit healthier than she, has a fighting chance at life. Some family is going to have years of memories and holidays with their child because of her. That's her purpose. That's all I need to know.

She has been an important, life changing catalyst in all of our lives. We will always have three children and we won't let anyone forget.

If there are further appointments, I'll update you.