Julia's Story

A few weeks ago, I spent a lot of time at a hospital in Boston visiting doctors with Julia. At this time of year, with her birthday rolling around, I think about what our life was like nine years ago in July.

I became pregnant when I was 39 years old – no bells, no whistles, just naturally pregnant and totally surprised. I had never really wanted to have children – being the oldest child in a large family did me in. I was always the responsible one looking after my four younger sisters. Looking in, motherhood didn’t appeal to me. The Farmer was apathetic about children also. He thought we were too old, too busy, too set in our ways. When I became pregnant, we decided that it wouldn’t be so bad – it would be a new part of our lives together – a new undertaking and beginning for us after being married for fourteen years. Heck, how hard could it be – we took care of plenty of animals, how different is a child?

Three weeks before our baby was due, my doctor sent me for an ultrasound, thinking that the baby was breech. I went in after work and met a friendly ultrasound technician. I lay on the table and she told me the drill – I should be out of there in a flash. No need to drink a lot of water – the baby was big enough that it wasn’t necessary. I lay there for 45 minutes, while she poked and prodded and added more and more jelly to the wand and kept prodding. I asked her what was wrong and she said nothing, she just kept moving the wand and taking more images. I didn’t know what to think and went home puzzled.

The next morning at work, I got a call from my OB-GYN that I should go to the hospital in Lowell to see a specialist from Boston. I called The Farmer on his cell phone and he rushed to Lowell. The doctor from Boston told us the ultrasound had found a problem with the baby. He suggested another high level ultrasound and an amniocentesis since I hadn’t had one before.

My pregnancy had been normal and easy. We were devastated. I lay on the table as they did a high level ultrasound. The doctor was straight with us, showing us the baby’s brain and discussing the implications. The baby’s head was extremely large and the ultrasound showed that the brain was full of liquid, that there was no brain tissue that he could see. He did the amnio and we met with a geneticist after. They were specialists, but could tell us nothing because they weren’t brain specialists. The amnio would tell us if there was a fatal genetic condition such as trisomy 18 which was what they suspected.

For the next few weeks, everyone told us the same thing – you’ll have to wait to see what happens when the baby is born. We spent very long days and evenings trying not to think about what lay ahead for our unborn child. I concentrated on my responsibilities at my job, editing knitting patterns for the upcoming fall season. We went to a lot of movies. I ate a steady diet of ice cream for three weeks and lost weight over the worry. I lay on the couch and cried. The baby began to hiccup and I lost my mind with sadness.

About a week before the baby was born, we were asked to go to see a neurosurgeon at New England Medical Center named Dr. Carl Heilman. We arrived at his tiny office on the top floor of NEMC. He was younger than we were but seemed smart, capable and mostly kind. He told us a radiologist saw some small activity in the ultrasounds of the baby’s brain but that most of the brain was filled with water. He didn’t know what was wrong with the baby but he told us there was a chance the baby had severe hydrocephalus and that a shunt could be put into the skull and that the water would drain off. He made no promises about the diagnosis being correct or not. When the results of the amnio came back, the doctors would know better.

A c-section was suggested because the doctors doubted I could deliver the baby vaginally. Before the date was chosen or the amnio came back, my water broke on a Thursday evening and I went into labor. We drove to Boston, expecting the worse.

We arrived very late in the evening and met an OB-GYN named Sabrina who seemed to be waiting for us along with her resident assistant. My sister Laurie was there also. The doctor told me I could try to deliver the baby vaginally. After a split second, I screamed “just get the thing out of me.” My sister told me she was relieved I opted for surgery.

I had a spinal and screamed at the anaethesiologist. Any manners that my mother had taught me had been thrown to the wind. I lay on the table as they cut me open, The Farmer by my side, him watching the whole operation. The room was full of people from the NeoNatal ICU, an anethesiologist, two OB-GYN and several nurses. I remember counting 15 people not including me and The Farmer. The whole thing is a rather large blur to me. I remember them tugging and lifting the baby out of me. Noone told me what it was – I asked and they said it was a girl. I lay there crying, not wanting to look at the baby, thinking she would die, trying to forget the whole pregnancy. They whisked the baby to the NICU and I went to the Recovery Room.

I have never been one to plan ahead. Even when I found out I was pregnant, I didn’t purchase anything for the baby. I didn’t decorate a room. I was baffled by talk of diaper genies and diaper services. I wouldn’t decide on a name until I knew the baby was born and I met it. As I lay on the table I mourned the child who would never be, the little girl I had called Gwen in my mind.

For two days, I stayed in my hospital room, drugged on painkillers, hitting the pain button incessantly, trying to make the whole situation go away. My Mom and Dad came from NJ, my sisters and some friends came from far and wide. The Farmer spent most of the time in the NICU, giving me little reports on the baby who was still nameless. He told me that if she was going to die, she should be loved. I just thought of all the love and nurturing I gave her in my belly and wanted the whole experience over. My sisters told me we really should name her. The Farmer and my sister Laurie decided on Julia and I went along (it had been on the name list – that’s one thing I had done).

My friends Sally and Missy came to visit and I decided I had the strength to physically get out of bed and meet the baby. They wheeled me down to the elevator and then to the NICU. I still remember the fear I had of what I was going to find.

There, attached to wires, computer monitors, and dressed in a little undershirt and a diaper was Julia with the largest head you could ever imagine – spongy with the cerebrospinal fluid that wasn’t draining through her ventricles to her spine. Underneath it all, she seemed alert. She had long, long eyelashes, long fingers, and the cutest little nose. Her eyes looked around. She was happy. The nurses had nicknamed her the queen of the NICU. I fell in love and I knew we had to do what we could do to make her happy.

On Monday, things happened quickly after all the specialists came back to work. Julia had test after test, CT scans, MRI’s, blood work, you name it. We met neurologists, nurses, pediatricians, toxicologists, and then re-met Dr. Heilman. After all the tests came back, Dr. Heilman suggested surgery on Tuesday to place a shunt in Julia's brain to help relieve the severe hydrocephalus she was ultimately diagnosed with.

That day, we got up very early and The Farmer wheeled me down to the NICU. The nurses had prepped Julia and she went off to surgery. We waited in my hospital room. Dr. Heilman came in after surgery and said everything went fine.

Doctor after doctor visited me in our “hotel room”, interviewing me, trying to determine what caused Julia’s condition. NEMC is a teaching hospital so you tend to meet zillions of doctors and residents. It is a great place and we continue to visit many of the specialists there to this day. In the end, the doctors couldn’t determine anything that would have caused her problem – her condition was the luck of the draw. (Dr. Heilman told us that about 50% of hydrocephalus cases occur for no determined reason.) The condition would not have shown up on an amnio. If I had known about it, would we have done something different? I don’t know. I don’t remember feeling as if I did something wrong to cause Julia’s condition, I just felt curious. I was a healthy pregnant woman – I tried to do everything right but then you can’t control things, can you? I certainly learned that lesson.

Julia stayed in the NICU for ten days. We met with plenty more doctors and as many times as we asked what her functions would be, noone would give us an answer. We took her home to care for her and to love her. In the next eight months, she had 3 more surgeries. Seven more surgeries before she was five. That first year is pretty much of a blur. Any normal mother’s first year with a baby is also a blur but mine really was. Just when Julia seemed to be doing well, we would find out she needed another operation because of the condition in her brain.

Julia never crawled - she scooted on her bottom. She didn’t walk until she was three years old. She will always have a shunt. The miracles of science right now cannot correct her problem totally. The condition has mostly affected her occipital lobe – the part of the brain that controls all her movement, math skills, and fine motor coordination. Luckily, she doesn’t have many of the other conditions some children with hydrocephalus have.

Would I chose to have a child with a disability? No, I wouldn’t. When I hear a baby has been born, the first thing I ask is if it is healthy. I overhear young mothers complaining about some little problem with their infant. I resist the urge to tell them “you don’t know how lucky you are, how small your problem is.” I also know how fortunate I am to have Julia in my life - her disability which may seem sad to many - is okay - we know it could have been much worse. We are very fortunate.

Would I give up being a mother to a child with a disability? No, I would not. Have I learned anything? Yes, more than I want to know. Having a child with a disability changes your life just as having any child does, only differently. As Julia grows, with each year, I learn new things about her disability, about her learning skills, about what we can expect of her and about what we should be patient. I know about EI (early intervention), IEPs (individual education plans), about neuropsychologists, neurosurgeons, neurologists, about PT and OT, about strabismus, the list goes on and on.

With each year, we have new challenges. People ask me, when they know what I do (knitwear and stitchery design), if Julia likes to knit or sew. I say no without an explanation. I am so proud of what my daughter can do with the tools she has been given. It took her physical therapist a year to teach her to throw a ball. She still can’t ride a bike. Tell her to move to the right and she’ll look at you like you have three heads. Eventually I hope she will get it, but it will take a while for her brain to process a command. Can she sew? Not yet and she may never be able to. (Her OT worked with her on it for a year and I told her to give up on it for now.) Does it make me sad? No, it really doesn’t. I wish we could enjoy some of the same things, but I can’t worry about it. Julia appreciates what I do and is interested in my work, but sewing and knitting won’t be for her and that’s okay.

Can Julia read and write and talk? Happily, yes, with gusto. Is she personable and friendly? Yes. Is she a happy child? Yes, very. She loves pretty clothes and handknit sweaters, she is great with animals, she is kind and loving and compassionate, she is articulate. She thinks doctors and nurses and everyone in the healthcare world is wonderful (as they are!). We go with her strengths and she’ll find her own interests and we’ll nuture them.

I think of the changes Julia has made to my life. If she had been born a healthy child, I probably wouldn’t be living here at our farm full-time. I probably would still be working at a demanding job, feeling stressed to the max that I wasn’t taking good care of my child. I would not have decided to slow down my professional track and try something new like writing books and freelance design, something that fit in with my new family life. I wouldn’t have raised pigs. I would still be running like crazy, missing out on the little things like class trips, spider webs, slugs, frogs and tadpoles. I wouldn’t be writing this blog.

I write this, our family’s story, so that other mothers with children with a disability of some kind know that there are others out here dealing with the difficulties of raising a different kind of child. I write this so that women who have teeny little problems with their kids realize they are very lucky. I write this to tell you that, mother or not, you too can deal with the curves life throws you. The outcome may not be pleasant and happy, but life goes on.

Take the challenges that life brings and try to learn from them. I do not mean this lightly – life brings many challenges along the way. Find solace where you can. And if all else fails, pick up your needles and knit and sew and stitch and create. It will help get you through your worries.