When I look at my daughter, I am constantly reminded that she is everything the doctors said she wouldn't be. I look at two sweet little ears placed in just the right spot on her head. I see her little neck, strong and supporting her head even from an early age. She is bright for her age and she loves to be read to, loves to count and especially loves puzzles. She is very active, and is an enthusiastic gymnast. She is very healthy. Most of all, she is a girl, and in my mind, she would have been anyway. This is the story of my miracle, my little piece of heaven, and my constant joy. She is a daily reminder of God in my life.

Emma's story started when I found out at 4am one morning that I was pregnant. My husband and I were overjoyed. I went to the doctor's office that day to confirm the pregnancy. My doctor told me I was "barely pregnant" with a big grin on his face, and warned me not to share the news with too many people or go on a shopping spree, because miscarriages are common. I've never been one who could keep a secret, so I think the whole world knew by 7pm that evening, and my husband and I had bought a few sleepers, too. I wish I could have held on to that pure joy of just being pregnant, but it didn't last long.

At about 8 weeks, I had some bleeding and my doctor ordered an ultrasound. They wouldn't let my husband into the room with me, which I thought was odd. The technician took quite a bit of time, conversed outside my door, and then had another technician come in, too. They wouldn't tell me anything. I heard them say "nuchal translucency" as they spoke with each other, but I had no idea what that meant. They finally let my husband in and showed him the baby's beating heart and told us the baby was fine.

When I went home, I researched the term I had heard earlier, and found out that it was associated with a variety of conditions, and was most likely Down Syndrome. The next morning, I went to the doctor's office and asked him to get my ultrasound results. I still remember sitting in the room listening to my Dr talk with the ultrasound specialist on the phone and convincing myself it was about another patient. "Are you sure" he kept saying, "I'm not telling her that unless you are 100% sure". Then he was back in the room. "Your baby has Turner's Syndrome" he said, and then he started explaining what it all meant. I listened intently trying to absorb it all and not really hearing anything at all except "the baby will look like a girl" and "99% chance of self-termination". I saw my husband crying and I realized this was really happening. Even the doctor was crying.

Before I knew it, I was at my gynaecologist's office. She was sympathetic. She explained that the baby would likely die in utero, but that I could choose to terminate the pregnancy now, even today she offered, and we could put this all behind us. I asked what the chances were that she (the doctors would always call her "it" as she would be infertile and hence not a girl by medical definition - that always hurt me most) would be just fine. She told us that we shouldn't even explore that possibility. If we chose to continue with the pregnancy, we would be referred to the high-risk specialist. We asked then to be referred to the specialist. We told her we needed to go home and discuss our situation with our family and our priest. It was so much to take - two days earlier we were joyfully expecting our first baby, now we were being told to just terminate the pregnancy and move on.

From the moment of the diagnosis, we took on a different focus than anyone expected. Yes, I told the doctor I needed to talk with our priest. She likely thought I meant about whether we should terminate the pregnancy, but I meant to prepare for our baby's funeral and for support in dealing with this diagnosis. I had a lot of questions about sacraments and what the Church would do for our baby.

By 11am that first day, we had named our baby girl - Emma Louisa Catherine Hazel. It helped so much to have a name for our baby now. I was happy that I got the girl I had always wanted.

I can't describe the feelings we experienced in the coming weeks. We were at once researching Turner's Syndrome and contacting specialists so that, if our baby fought to live, we could give her all of the help available, and at the same time, if she wasn't up to the fight, we were preparing for her death and how we would commemorate her short life. It was important to us that she be recognized and remembered as a baby girl, who had lived, if only inside of me. We talked to Emma every day, and encouraged her to live, but we tempered that with our love and understanding if she was too sick to fight any more. We told her about God and how He is with her every moment. We began to find the 1% survival rate a promising statistic - after all, when you consider how many people are on this earth, one in every hundred still amounts to a lot of hope. We also were grieving the loss of a healthy child and a carefree pregnancy. It was so hard when people would talk to me excitedly about the birth of our child, as I was still grieving. We chose not to tell people about Emma's condition, because we were afraid people would treat her differently from the start. That meant pretending all was well, which was an incredible challenge (and at which I admit I failed miserably). Only our closest friends knew about Emma's diagnosis.

I remember talking with a good friend about baby Emma shortly after we got the news of her diagnosis. She said that she never liked it when people said that God only gives us what we can handle. She told me, "God didn't plan this, rather, he weeps with us, and gives us the strength we need". I still hold on to that wisdom.

We met with the high-risk specialist and consented to more ultrasounds and blood tests. I would not consent to the amniocentesis as it increased the risk of miscarriage, and we wanted to give Emma every opportunity in our power to help her live. Most health information we needed could be gathered from later ultrasounds, and we felt that would be enough to decipher what specialists and what special care would be needed at Emma's birth. With Turner's Syndrome, in addition to various physical differences, there was a great chance to heart trouble, as well as other concerns about her organs which I cannot now recall. I just remember being particularly concerned with her heart.

I remember one particular night in my pregnancy when I had terrible cramping, and I was sure I was losing our precious baby Emma. We talked to her, sang to her and told her we would always remember her. I played the song "Fly" by Celine Dion, and reassured myself that Emma was going to be with God now. I thought I would never stop crying.

And yet, Emma lived on. Each day was one day closer to the possibility that Emma might live beyond her birth. My mom reminded me to celebrate each day and that we would only mourn when and if the time came to do so. We had thought of everything. How we would manage the many possible surgeries, how we would cover up the webbing on her neck (a classic sign of Turner's Syndrome) with sweet hooded sweaters that my mother was having knit. We would do everything in our power to give her a meaningful and full life and we would protect her from discrimination as much as possible.

At my eighteen-week ultrasound, God gave us a miracle. The specialist got the baby into every position possible to assess her from every angle possible. Finally, he told us the news we had never expected to hear. The cyst on Emma's neck was gone (that cyst is the nuchal translucency which was the cause for Emma's diagnosis). He looked at the former ultrasound and confirmed that it was indeed there then, and gone now. He could not offer us an explanation, but assured us that this baby was as healthy as any other, and that there was no reason we could not return to our regular doctor for the rest of the pregnancy.

I'd like to say that we were elated and relieved and all that we had lived through in the past 10 weeks was erased. Truthfully, we hoped that he was right, but were not convinced. To this day, I can rationally see that my Emma is a healthy little GIRL (she would always have been a GIRL to me anyway), but I always wonder if the doctors just don't want to tell me the truth. Really, there is nothing we could have done to treat a mild form of Turner's Syndrome until Emma turned 12, so maybe the doctors will sit me down then and tell me that she really does have it. I think there will always be doubt. After what I have been through, I can't quite believe that I really have a healthy little girl who will grow up and always be my healthy, happy Emma. My faith has just not reached that level yet.

Emma was born on December 9, 2001 - a healthy baby girl. I requested that the test for Turner's Syndrome be done, though the results have never been formally given to me. I felt quite vindicated when, shortly after Emma's birth, the doctor that recommended that I terminate the pregnancy came into my room and saw a healthy baby girl in her parents arms.

Doubts aside, I have never questioned the love I have for my daughter, and that she has been a source of constant joy in my life. My mom says she is God's gift to us for our faith - I don't think we were deserving of such a gift. Emma is a blessing, maybe even a miracle, but not because we deserve her. God is good.

Do I have regrets? Yes. I regret that I mourned the loss of my "healthy baby". In doing so, I did not celebrate each day as my mom had encouraged me to do. I wish I had the wisdom to recognize that I had not lost anything at all, that I still had a baby, a life, to celebrate. I regret that I felt that my pregnancy was not one that could be celebrated, because it was so unlikely that my child would live. It took me some time to realize that all life should be celebrated for every moment of its existence.

Emma has taught me many things particularly through her start in life. She has taught me that 1% can still be a promising number. She has taught me the power of prayer, faith, and community. Most of all, she taught me to love like I have never loved before, and to love what I cannot see. Emma is living proof that every life is valuable and special, regardless of health, deformities or "quality of life". Every human is capable of love and being loved - why should a wee baby, not even born yet, miss out on that greatest human experience? If Emma's life inside my womb were the only life she would have known, she would have known her parents' love, her family's love, and God's eternal presence in her life. Could you imagine a more fulfilling life than that?

We had fantastic support from our Church, and especially our priest, who included her in the prayers of the faithful for weeks, by name. He joked to us that she had better not be a boy, or he would look pretty silly. We all prayed for her. I cried every week at mass when the whole church prayed for baby Emma and her family, most of them never knowing who they were praying for. I found that so powerful and moving. At Emma's baptism, when we were asked, "What name have you given this child?", there was a knowing smile from our priest and our family, because this faith community had already prayed for this child by name even if they did not know it; God had already called her by name.

"By name I have called you

By name I will save you

Forever with you I will be"