One Mum's Story: Kate & Sienna

Kate & Sienna - shortly after birth

The appointments all went smoothly. I had morning sickness up until the 20th week which was horrible. I found myself craving some of the strangest things like the smell of dirt off a potato or the taste of toothpaste!

The ultrasound at 21 weeks showed that we were having a girl and I felt like I was on top of the world, plus I was told that baby was healthy, the right size, had ten fingers and ten toes, everything accounted for.

I was admitted to Westmead Hospital on July 2nd as we had prebooked a C-section because of complications with my son's delivery.

We named our daughter Sienna Therese and she was born at 1:34pm. When I saw my daughter for the first time, my eyes were filled with tears of happiness, I looked back at Jason and his eyes were the same. I was able to hold her, anxious to do what all mothers do when their baby is first given to them after birth, count and make sure all ten fingers and toes are accounted for. Just as I went to unwrap the blanket, the midwife said that it was too cold and to leave her wrapped up. I held her for a minute, then the midwife told me that she had to take her to neonatal, as there was something she wanted the doctors to have a quick look at but she assured me Sienna was fine. I asked her if it was serious and she replied no.

In recovery, I begged the nurses to call neonatal back to see what was wrong with my baby. Approximately ten phone calls were made and each time the nurse came back she said they could not tell as she was still with the doctor. I had no idea what to expect. I thought she was dying, it was horrible. With an hour spent in recovery and a further two hours in my room in the maternity ward, alone, I was on the verge of a breakdown. Nobody would tell me what had happened to Sienna.

Finally my mother, husband and a doctor walked in. I held my breath as I saw tears rolling down my husband's cheeks, thinking the worst. With my mother holding my hand, the doctor informed me that Sienna had been born with a rare birth defect. She had absent thumbs bilaterally, a shorter right arm than the left with the right elbow bone being fused and unbendable, shortening of the upper limbs on both arms and abnormal configuration of her fingers. This news came as a shock because the ultrasound carried out prior at the hospital when I was 21 weeks pregnant had shown that my daughter appeared to be healthy. I was shocked beyond words, I just cried. I felt like I was mourning the healthy baby I was expecting.

That night, once I got the feeling back in my legs, the nurse wheeled me down to neonatal to see my daughter. She was so small. I was so scared to look at her hands and arms but after ten minutes I removed the blanket and had a look. My eyes welled with tears and I got so dizzy I had to be taken back to my room.

Within 48 hours after having my C-section, the hospital discharged us. I had not spoken to anyone in relation to Sienna's condition but one doctor three hours after she was born. I had no counselling within my entire stay at the hospital. I had no idea of how to care for the small fragile baby that lay infront of me. I didn't know whether I could move her arms, I was too scared to dress her because of the way her pinkies stuck out. And the next day when she was eventually discharged from neonatal and was brought to me, she would scream in pain when I tried to dress her because the pinkies would get caught in the sleeves. It was heart wrenching to listen to.

With no professionals around me to guide me or assist me, I was leaving the hospital still experiencing shock, and it wasn't until I got home that I experienced several breakdowns, feeling upset, confused, angry, frustrated, breathless and helpless. I had no idea about many things regarding my daughter's condition such as what had happened? What caused her condition, were there support networks, people I could talk to, was there any special treatment or forms of care I should have been providing her? Had there been ultrasounds on her hands, anything at all?! I was told nothing.

This information, Westmead Hospital was unable to provide me. The hospital claim that Sienna's condition is extremely rare and there is hardly anything known about her type of deformity, therefore my husband and I were left in the dark. I don't want anyone else to have to go through what I went through. I was not even given a counsellor to talk to. I did not have my precious baby for over the first 24 hours after she was born and they were the worst 24 hours of my life, I was an absolute mess. I could hear the other mothers and babies in the middle of the night, their babies were crying and I just wanted to hold mine. I had no idea whether my daughter was going to live or die as the doctor in her brief few minutes with me said that there were high chances Sienna had kidney and heart problems, she could have holes in her heart or absence of actual organs. As I said no mother should ever have to go through the pain that I did, not knowing is the hardest thing in the world.

I was lucky that my family and wonderful husband were there for my daughter and I. I am not the most religious person in the world but I must admit at first I turned my back on God, blaming him for what had happened, which did not last for long because a very good friend of mine gave me some advice. That advice was "God only gives you as much as you can handle. You are a strong person and you will pull through this. There may be one pair of footprints in the sand at the moment Kath, but they are not yours.".

Since the moment I saw Sienna, I fell in love with her, she is my daughter, my little princess. I am so thankful that she does not have any serious heart problems, only a valve that instead of going from the heart to the lung, goes from the lung to the neck. I have been told that unless it closes itself, a simple operation around the age of three can fix that.

The most painful thing at the moment is that she is at the age that babies love to roll from back to stomach and so on (four months). Sienna's arms are not strong enough to support herself when she is put on her stomach and when she rolls over while sleeping or even awake onto her stomach, she risks suffocating herself, or cutting off her air supply just long enough to do some serious brain damage if I don't get to her in time. She has done it so many times now and I am finding it so hard to sleep at night because I fear every night when I go to bed my precious baby will roll onto her stomach and die. She even nestles her head into pillows I put around her, so that doesn't help either. She has to sleep in my bed next to me, with her head on my arm.

I made the best of a bad situation. I never doubted the love I have nor do I regret my child. I was scared at first but loved her from the moment I saw her. Sienna is perfect to me and I am going to fight for mothers everywhere to make sure: "No mother after giving birth to a child with any type of birth defect, will ever be discharged from a hospital without counselling because it is really a huge deal to try and work through it all and counsel yourself."

With my father's help, we are registering a charity, we have decided to call it "C.H.I.L.D" which means "Children Having Infant Limb Deficiency" and our goal will be to bring the families of NSW with children who have limb deficiencies together. Everyone will be each others support network. New mothers can get advice from families who have lived what she is about to go through. I am already organising my first charity auction and by the time that rolls around in February 2009, the charity will be up and running. We are also selling sienna coloured ribbons, which are $5.00 each which will go to C.H.I.L.D and will be donated out to the right causes. Ie: research into limb differences and a music program for children with limb differences.

My beautiful son Kobe is always slobbering her with kisses and hugs, he even told me the other day when counting things, including his fingers, that his baby only had eight, not 10 and when I told him it was because she did not have thumbs, he said, it's okay mummy she can have mine. Kobe is three and the love and compassion he feels for baby Sienna makes me so proud to be his mother.

My daughter's future will undoubtedly involve many visits to specialists clearly because of her condition that still, to this day, does not have a name. It has similar charictaristics to Weyers Oligodactyly but upon checking her chromosomes and bodily organs, there were some things that Weyers sufferers have that Sienna doesn't and vice versa. That's just the closest syndrome to date the geneticist can put to it. I know that I am going to keep going until the cause is found out, the words "It's just one of those things" does not gel with me and I need answers.

The team at The Childrens Hospital at Westmead are fantastic though. They have provided me with the support outside of family and friends that I so dearly needed. When Sienna is approximately two year old, a very skilled surgeon, Professor Michael Tonkin, will perform a procedure called pollicization, in which the fourth finger will be brought down and rotated around to be turned into a thumb on both hands. There will be work done also to her pinkies as we believe they both share the same knuckle as the second finger. Unfortunately there is nothing that can be done about her wrists or right elbow which is fused. Also lengthening of the right arm is apparently out of the question due to the way her bones are growing.

My daughter is a beautiful baby girl full of life. We are thankful that she at least has the other four fingers; there are children who are born with missing arms, legs and and other limbs. It is important that this is brought to people's attention. I had no idea before having my daughter that limb deficiency was a birth defect and I am making it my life's mission to make sure it is acknowledged and sufficient funding goes to research and the families. I have met lots of lovely poeple in the last few weeks who have limb differences or have children who had limb differences. These people live life to the fullest and let nothing get in their way. I only hope that my daughter can do the same.

As stated, I will be holding a charity auction at Wentworthville Leagues Club, in Sydney in February. We are currently seeking out donations to help us make the night a success. So far we have had donated a pack from the Melbourne Storms, $3700 worth of jewellery from Australian Opal Cutters, also from Aust Opals, $7500 worth of printing for brochures which will be designed by the entourage at C.H.I.L.D which will be distributed to every medical centre in NSW. We have accommodation donated from The Courtyard Mariott Parramatta, transport from Able Minibuses & Limousines and HF Wedding and Hire Cars, Harry Browns Pies Peas and Mash, BMW Australia, Revlon, Ties and Cuffs, 1st Fleet Transport, PJM Plumbing, Rotary of Prospect and of course, the wonderful Wentworthville Leagues Club who are doing so much to help me with my event. Even the fantastic gang at Mum Zone are helping me by just getting my story out there. Thank you Emma!! If you know of someone or work for a big organisation that could donate something to our night for our auction, please get in contact with me, Jason and I would really appreciate it.

Kate Moffett
kate@childorg.net.au
0411 597 756

PS. I have a group on Facebook called "Sienna Moffett". Feel free to join and help us to raise awareness!! Thank you!!

* Editor's note: The C.H.I.L.D website is now live: www.childorg.net.au - supporting children born with Congenital Limb Defects

Read Kate's Media Release.

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