the doctors and nurses who are in charge of saving your child's life. If there is anyone who knows this, its my friend Chantel, who's doctors worked miracles with her beautiful son Kai, who also had hydrops.
Chantel, in her typical loving way, has been keeping the doctors who worked with Kai up to date via email over the past year, with his progress. As she comes up to Kai's first birthday in a few weeks, she has decided to send them all little books, of his progress, his scan results and photos etc. She asked anyone who was touched or impacted by Kai's story to contribute to the books. Below is what I wrote.
Wednesday October 21st 2009, was (at the time) the worst day of my life. It was the day, which full of hope, and promise, my husband Matt and I walked into our 18 week Morphology Scan, expecting to see a healthy, happy baby. We didn't want to know the sex, after finding out our first daughter was a baby girl, and having had four miscarriages, we just wanted a surprise. The joy, of hearing "its a ..." at the birth. I lay on the table, grinned at my husband and turned my head to look at the screen. Almost immediately, something wasn't right. I could remember, from my scan with my daughter Lucy, that the tech never took that long to look at the heart. This lady kept going back to it, over, and over and over again. She was frowning, but when she saw me looking at her, she'd smile, trying to be reassuring. Quickly I stopped smiling. Internally, I was panicking. I had no idea what could be so wrong, all I knew was that our precious baby was still there, heart beating away, dancing and jumping around under the wand.
"Hydrops Fetalis". That's all she said. Two words and my world fell apart. I surprisingly had heard of Hydrops before. I read an online blog, a lady whose unborn son was suffering from SVT before he was born and consequently developed Hydrops. He pulled through, was born alive and is now, thanks to miracle doctors, SVT free and perfectly normal in every way. But I remembered the word. Because the first time I ever read it, I looked it up. I couldn't remember much, except that it could be terminal. Immediately, I burst into tears, while my husband just looked mystified. Matt is the eternal optimist, he kept telling me it was going to be ok, while having no idea of what our precious baby was facing.
Three hours later we were in with the Maternal Fetal Medicine specialists getting a comprehensive scan. The total diagnosis was Hydrops, Fetal Anaemia and Ascites. The bowel looked "bright" however the Brain and other major organs looked ok. The growth, while continuing was low on the chart and our baby had impossibly short legs. Throughout our pregnancy, we were scanned between once and twice a week, had blood tests done to check for infection (which came back clear), and were treated with the utmost love, support and care by the medical staff. We were told that a termination was recommended, due to the severity of the medical conditions, but we refused. The doctors told us that it was unlikely she would survive until 24 weeks gestation, that we should be prepared to come in and hear that our baby has passed away. We still refused to entertain the idea. We also refused any invasive testing, preferring to wait until our baby reached a viable stage before we intervened in a way that could risk her life. The plan was always to get her to 30 weeks, and then to do both the testing, and a blood transfusion, to try and keep her going a little longer. On December 30th, 2009 we had what would be our final ultrasound our baby looked perfect! We thought we were getting our miracle. Then we found out that the AFI was 1.2cms. We were told be on the lookout for decreased fetal movement, and to come straight back with any concerns. I had no idea how serious this was for her.
Two days later we went to hospital to get monitored due to decreased fetal movement. Ariana Rose was born at 29 weeks gestation by emergency C-section, with severe, unexplained Anaemia, Complete Kidney Failure and Severe Hydrops and Skin Oedema. She fought with everything she had but evidently in the two days between the scan, and delivery, her condition had deteriorated rapidly. At just three days old she had a severe grade four brain bleed. Her liver stopped working, she was severely jaundiced and she was on three different medications to keep her blood pressure just above baseline. On day four, we invited everyone to come hold her, to love her and to say goodbye. Our oldest daughter Lucy who is two and a half held her for 45 minutes, singing" twinkle twinkle" and calling her "little sweetie." She loved her sister, enough for a lifetime and then four hours later after everyone else got to hold her and say their goodbyes, Matt and I removed her life support. She passed away in our arms an hour later.
When we found out Ariana was sick, and what was wrong, somehow through my research, Chantel Woodard found me. Without the support, the care and the love of her family, I do not know where I would be today. So to each and every one of you, thank you. What you did for Kai, and for the family is to me, a miracle. Your kindness, compassion and dedication to your job reach far beyond little Kai, it reaches to family, friends and acquaintances. My life has been changed by how you treated Kai. My daughter Ariana’s life was changed by your treatment of a baby, six months before she was born. We have never met, but I feel I owe each and every single one of you a deep debt of gratitude. All I can do, is say Thank you, and while to me, it doesn't seem enough, I write today to let you know that you are so appreciated, and so very well respected by myself and my family, for what you enabled a complete stranger to do for us, and for what you did for them.