Mummy's Story

Saturday, 4th February
It's about that time of month again, I wonder if it happened this month. My temperature chart shows the telltale signs of ovulation two weeks ago, for the first time since my surgery last September, when I first started tracking. Surely though, it can't happen this quickly, we want this baby so much, I just know it's going to take forever.

Sunday, 5th February
There's still no sign of anything happening, even though I'm only due today. We bought a test this morning coming back from the supermarket, and I've waited the four hours they recommend since last using the bathroom. Expecting the test to take a few minutes, I watched the line of moisture rise up through the window and the control line turns pink. Half a second later, a second deep pink line shows up and my whole life is thrown upside down and shaken around a bit. I stood, staring in complete disbelief at the little pink line that wasn't there last month, shaking a little, feeling tears of joy welling up. I walked quietly out to Brian, who was working in the living room and sat on the edge of the futon and held the positive test out to him. I'm not sure he understood for a second and looked at me and said "It's positive?" I nodded, not able to speak with the fear, excitement, and joy I was feeling right then. What sort of mother would I make? How were we going to bring our little baby home for Christmas and drag all that luggage too? How was I going to cope with pregnancy and birth? So many questions, so many worries...but the feeling of joy was indescribable!

That first week, I took two more tests, I couldn't believe that the first one was positive, and I expected the next one to be negative, but each one gave a second dark pink line, just like the first test I took. In the weeks that followed, we arranged an appointment with our GP, mostly to get details of OB's in our area. We found a practice close by and said we'd give them a try. I loved them right from the start, it was warm and friendly there right from the very beginning, so we chose to stay. At 5 weeks, I noticed a little spotting, so I had blood tests taken to check my hcg levels. They didn't rise as much as expected, so I had a sonogram scheduled late the following week. There was fear that we were losing the baby we had only found out about, but the sonogram showed a little white fuzzy blot on the screen with a tiny heartbeat and tears of relief poured down my face when I saw it and heard it. Our dates were only out by three days, not for a first timer! Almost immediately, I started to feel miserable, my stomach felt sick all the time, and I completely lost interest in food, though I ate what I could for the baby's sake. Despite it all though, I was really enjoying my pregnancy. It felt so good to have another life growing inside me.

At 12 weeks, we went for our appointment, but fear struck again when the doctor couldn't find our baby's heart beat on the doppler. He took us down to another room and pulled out the portable sonogram machine. There she was, waving at us, happy and strong as ever, and everything looked good! We relaxed again, we'd made it through the first trimester with our baby thriving inside me, nothing could go wrong now and I finally truly looked forward to having a baby in our lives and began to make plans. We'd need a bigger apartment, we weren't allowed three people in the one-bedroom that we had. And having a washer-dryer to ourselves would make the endless laundry pile seem a little more manageable. I bought little things - onsies, a fleece swaddling blanket, a warm stroller cover for the cold winter our baby would meet soon after her birth. I began crocheting blankets and jackets for her, and so convinced that we were having a little girl, I made a little dress that would be just the right size to fit to take her home for Christmas in.

At 16 weeks, we had another appointment. This time, there was no trouble picking up a healthy heart beat on the doppler and I felt more secure knowing that she was OK. I was asked if I'd felt any movements yet, but it was too early yet. That night, lying in bed and verging on sleep, I felt something. I lay perfectly still and wide awake, waiting to feel something again. And there is was again! I waited longer to see if I'd feel any more, but there was no more. After about an hour, I drifted off to sleep with a smile on my face. For the first time, I had felt my baby's kicks!

At 18 weeks, we had our AFP test come back with a 1:63 chance of spina bifida. We were scared, but in my mind, I'd know that if it was confirmed, I'd be prepared to do the very best for our little girl (or boy, if we were wrong!). A sonogram the next day showed an incredibly stubborn little baby, but perfectly healthy. She was so stubborn, she was the youngest baby ever to learn the meaning of 'No'! While the technician tried to get a measurement of her head, our little girl wouldn't move to a better position, so the technician poked my tummy to try and encourage her to move. We saw a tiny hand reach up to her right ear and suddenly, her head started to shake back and forth. She was saying no to us! We laughed, it was the funniest and cutest thing we had ever seen! The doctor reassures us that there was an intact spine, no signs of abnormalities on her brain, no sign of clubbed feet. She was perfect. We still couldn't determine the baby's sex, but more and more, we believed that she was really a she. The doctor explained that she was measuring about a week smaller than expected, but that it was within the error margin of size measurements at my stage of pregnancy, so it was nothing to worry about. We scheduled a follow up in three weeks, and left feeling a lot more relieved. Our baby was really on the way!

Three weeks later, our whole lives fell apart. Our baby hadn't grown very well and was now measuring two and a half weeks behind. They detected a single umbilical artery, a left multicystic kidney and some mild thickening of her left ventricle wall. All together meant that a chromosomal anomaly was highly likely, and we were offered an amniocentesis that day. We opted for it, we had to know what to prepare for. We were left alone while the doctor went and arranged things and we both cried for what we felt we were about to lose. The amnio was quick and painless, I went home that day and called home and cried over the phone to my mother. She told me that they were probably wrong, to be positive and I tried, but it was hard to ignore the concerns of a well trained professional. I spent all weekend researching what could be the cause. It was this time that I was introduced to trisomy 18 and trisomy 13, but I didn't read about them. I read the first line, which contained that horrible phrase "not compatible with life" and refused to believe that this was what was wrong with our little baby girl. But four days later, I received a phone call as I left work for lunch. I was in the car on my way to meet Brian, and all I remember were four phrases "trisomy 18", "Turners syndrome", "not compatible with life", "I'm sorry". How could the life inside me, with so much gone wrong, still be kicking and enjoying life? How did she survive this long? It all felt too much, how was I going to cope with losing our little girl? As I pulled up to where Brian was waiting, he knew that the news had been bad.

At our OB's office, we were told that we had two choices - termination or to carry to term, knowing that she probably wouldn't make it. Which choice do you make? Both will bring the same outcome eventually. Which choice would bring less suffering to our little girl? I asked Brian what he wanted to do, and he told me that he was leaning more towards termination, but only if that's what I wanted too. Neither of us wanted to make a decision about our little girls life without the complete support of the other, we both needed to be her parents and do what we felt was the very best for her. The next day, we made an appointment to see a doctor about termination, our OB didn't do them. That night, Brian cuddled up to my tummy to talk to her and broke down in tears. She kicked a little more every time he talked to her, she knew his voice well. We both thought that we'd only have a couple more nights with her before she was gone and then we'd never feel her kicks again. It was such a painful thought, I couldn't fully take it all in. Soon, I'd be alone in this body again, and it felt so wrong. That night, we talked about naming her. Did we want to keep the name we had chosen? Would we call her by the middle name we had chosen? Neither felt right, I didn't feel a connection with her and either name. We had always imagined a little girl clinging shyly to her Daddy's leg whenever we went to visit family, hiding behind him, with the hint of a cheeky grin. The name Arily came to me, it is an acronym for "Always Remember I Love You", it felt so right to give her such a special name. Her middle name is Faith, we had faith that we were doing the right thing by her, and that we would be rewarded in the future for our strength and willingness to carry on against all odds. She carried both of our surnames because she was part of us both equally and we wanted to reflect that. A very special name for a very special girl.

It was sunny and warm when we got to the new doctors office and we waited half and hour, sitting in the shade, talking together and trying to convince ourselves that it was the best thing to do. Sitting in the waiting room, Brian said "If you want, we'll walk out that door right now and never look back", I had a feeling that he was having second thoughts about the termination and, admittedly, so was I. Talking to the doctor, we got the full story, that all the fluid surrounding our little girl would be pumped out and a saline/ammonium mixture would be pumped in instead. He was going to poison our little girl and we were horrified. While getting ready in the examination room, we had a minute to talk and I told Brian that I couldn't go through with it. I felt my chest tightening and knew that if I signed a consent form to go ahead with the termination, they'd be admitting me to hospital with a severe anxiety attack. After the exam, we told the doctor that this wasnt what we wanted, we were going to carry on. We let our own OB know the next day and we found her so very supportive, it was so helpful. She explained what to expect and told us of another couple who recently had a baby with T18 too and asked if we'd like to talk to her. We did, and it was so helpful to hear her sounding so positive in such a short time after her little boys death, it felt like there was light at the end of the tunnel again.

The following Monday, we both returned to work, we both needed to feel a little more normal for a while, take our minds off this horrible situation we had found ourselves in. It was easier than expected, it helped to sit and chat idly about office politics, what our plans for the weekend were, gossip a little, all the normal, mundane things we were up to before we had gotten the news about Arily. It felt god to feel a little more normal for a while. My supervisor is a trained nurse, so she was aware of what our problems meant and was so understanding of the time I needed to take for appointments and, for that, I'm eternally grateful.

Two weeks later we went to the OB's office for a check up and we heard the same little heart beat loud and clear on the doppler. It sounded healthy and strong, surely, they were wrong and my little daughter would be fine. She'd make it to term and prove them all wrong. It didn't matter to me that she'd have problems, I was prepared to face them head on, though raising a child with such severe problems was not an easy task. I was so convinced that Arily was going to be one of the lucky 10%, there was no way she could die, with a heartbeat that strong, she was a fighter and she was going to fight her way to the bitter end.

On July 6th, 2006, we had a sonogram scheduled again, to check her progress and we would have more information about her condition. I felt sick with fear that morning, I hadn't felt her kick in a few days and I didn't have a good feeling. Brian had a habit of asking several times a day if I'd felt her kick, I'd always call him if I had, but there had been no little bumps and nudges and I was scared. At the office, the technician very quickly scanned over my belly and took a quick measurement of her femur and her head circumference. She tapped a few more buttons and we looked on in fear. There was no movement, we didn't see a heartbeat. we were hoping that maybe we'd missed it though, maybe she'd just moved over it too quickly, but our little girl was so still when before she had been so active and stubborn. We were left alone for a few minutes to wait for the doctor, and I cried, I knew she was gone, but I still didn't want to say it because hearing it would make it more real. A few minutes later, the doctor confirmed "The baby had passed", and it was the most heart breaking news we had ever received. I was 26 weeks pregnant. Brian held on to me and we cried together. We so much wanted a few more weeks, we wanted her to make it to term and open her eyes and see us, even if she lived a few hours, or even minutes. It wasn't fair that we weren't going to get to meet her before she passed away. So many other people, who's babies had worse physical problems made it all the way to term, why couldn't Arily? Why?

The next day we arrived a the hospital around 6:30am and we both sat in the car for a minute, trying to gather the will to go inside. By 7am, I was in the bed, preparing myself mentally for the phsyical pain I knew was coming, and didn't want. Didn't nature know how much emotional pain I was in? It wasn't fair that I had to go through the physical pain too. IV's, blood draws, bp monitoring, being poked and prodded continuously. My OB came in soon after we had settled and began my first dose of Cytotec to start labour. I was comfortable all the time, the pain was a bearable level, but at 4pm, when the time came for my third dose, I opted for an epidural because there was a possibility that the next dose could cause thing to move along so quickly. Still no Arily by 9pm so another dose was administered. I slept for a while later that night, and woke up just before midnight with severe cramping and wanted my epidural topped up again. First, though, they checked my progress and it was discovered that I was far enough along to delivery Arily then. She came silently into this world at five minutes past midnight, there was no pain, but when she came, I felt an overwhelming sadness that she wasn't inside me any more, and I wanted her back. I think she waited that long because, by then, it was the same date in the US as it was in Ireland, and we wouldn't feel confused as to when we should celebrate her birthday. She was given to us to hold for a while, and we were amazed at how absolutely beautiful and perfect she was. All that there was left to do was to grow a bit bigger. She was taken away to be cleaned up, and her hand and foot prints were taken for us, and our nurse did an excellent job in putting on the little gown I had made for her to wear. When she came back, she was really beautiful, dressed up warm and snug and wrapped in the matching blanket I had for her. She looked so peaceful, as though she were asleep and I almost expected her to open her eyes and look up at us, but she never did. We spent 12 hours with her, passing her back and forth between us, never leaving her down for any longer than we had to. Neither of us could stop looking at her, we wanted her face burned into our memories forever, and we couldn't believe how much of each of us she had inherited. I slept a little with her in my arms, I couldn't bear not being apart from her and sleeping away from her for the first time in six months. Before we left the hospital just after midday, we both sat and held her together and talked to her, telling her how proud we were of her, how beautiful she was and how much we were going to miss her. When the time came to leave, we wrapped her up in another blanket and took the one she had been wrapped in all night with us. We had other keepsakes too, a card with her time and date of birth and her weight and measurements, a little teddy bear, the white rose they had taped to our door, the measuring tape with her head, chest and length measurements marked on it, and now my hospital bracelets. But the hardest thing I ever did was to turn away and leave my baby girl lying in the crib, alone in the room, knowing that I'd never see her again. But the time had come, we'd said our goodbyes, taken almost 100 photos, some video clips and given her all the love and cuddles we hoped would last a lifetime.

We find ourselves at peace now, we gave our baby girl every chance we could and her time came when she chose it. Neither of us have any regrets for what we did, and, in some way, there's relief in the knowledge that there wasn't many more weeks of wondering if the end had come, if the next trip to the OB's office would find that she'd passed away, and in knowing that there was no suffering. She lived never knowing what it was to feel pain, fear, hunger, lonliness, hatred, all the things wrong with this cruel world. All she knew was what it was like to be loved, warm and safe in my tummy. Right now, we're sad, there have been many tears shed in the past three days, and many more to come in the days and weeks, even years ahead of us. But we know that it will get easier in time. Not that the pain will ease or go away, but that we will grow stronger, and we will carry it standing a little more upright each day, until soon enough, we'll be able to pick our way through life again with a normal stride. Both of us dream about her each night, they're pleasant dreams and she's always smiling at us. We'll never forget her, and will do everything we can to keep her memory alive.

There were times when I questioned my faith, wondered why we were about to lose our baby when people around us, people who didn't want a child, people who abuse drugs and alcohol, smoke, do things that put their unborn child's life at risk, but I realise that there is an important lesson in all of this. I had prayed when I noticed spotting in the first trimester that I wouldn't miscarry, and my prayers had been answered. I had prayed, when we were trying to decide on whether termination or to carry on was best, to help us choose which was best for us, and we got our answer in a roundabout way. I prayed that, unless she was going to one of the lucky few, that she would pass soon and there would be no suffering, an my prayers were answered then too. Our baby girl was too good for this world, and we know, now more than ever, that we'll see her again some day. Baby Arily has brought Brian and I together with a bond stronger than I ever could have imagined. He's my best friend, my confidante, father of my baby girl and my husband. He's been my rock and I have been his during the last four weeks of Arily's life. I believe that every person has a reason for life on this planet, maybe Arily's was to help our relationship grow a little stronger. Now she can be proud that we have achieved that and we know that she's smiling down on us now. There's something around the corner for us, there's a reason that we'll never know for why we were given Arily, only to have her taken from us so soon. But she knows...

Love you so much Arily Bear, we'll see you again some day...

Mummy

Arily Faith Kinsella O'Halloran