Katherine and daughter Sienna.
I always dreamed of having two children. A boy and a girl. Perfect, a pigeon pair as some may say. I married the love of my life. We welcomed our first child into the world in 2005, our beautiful son Kobe and our second child Sienna, a little girl in 2008.
I feel like I was blind before Sienna came into our lives and that after she was born and things progressed, my eyes were open for the first time to the real world. I had started weight watchers late 2007 and had lost around 7kgs when I found out I was pregnant again. My husband Jason and I already had Kobe, he was 2-years-old so the idea of a new little baby for him to play with was exciting. 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 of 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, right size, had ten fingers and ten toes, everything accounted for. I was admitted to Westmead Hospital on July 2nd as we had pre-booked a C-section because of complications with my son's delivery.
It's hard not to blame yourself. Forty percent of your hand movements involve the thumb.
We welcomed our daughter
We named our daughter Sienna Therese and she was born at 1:34pm. My eyes swelled with tears of happiness the very first moment we saw her and 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, make sure all ten fingers and toes are accounted for. Just as I began to unwrap the blanket, the midwife said that it was too cold there in the delivery room and to leave her wrapped up.
They took her to the neonatal unit
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 break down. No body would tell me what had happened to Sienna.
She was born with a rare birth defect
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, 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 same hospital I had just given birth in, had shown that my daughter appeared to be healthy. I was upset beyond words, I just cried. I felt like I was mourning the healthy baby I was expecting. 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.
We were left in the dark
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. 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, the hospital and the doctor were unable to provide me. The hospital claim that Sienna's condition is extremely rare and hardly anything known about her type of deformity, therefore my husband and I were left in the dark.
I felt dizzy when I saw her
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 were filled with tears and I got so dizzy I had to be taken back to my room. I did not have my precious baby for the first 24 hours after she was born and they were the worst 24 hours of my life, I was an absolute mess. I've actually kept the tiny dummy they gave her, obviously to comfort her. I have kept it because to me, that dummy was the one thing that soothed her when I couldn't. It was her comforter when I couldn't be. It sits in my bedroom dresser and I never thought I would have so much respect for such an inanimate object. It's one of the most important things in relation to Sienna that I can hold onto.
My husband was shocked
The next day, just before lunch time Sienna was discharged from Neonatal and was brought to me. I had no idea of how to care for the small fragile baby that lay in front 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 stick out. I tried to dress her in the cute little pink outfits I had brought from home and she would scream in pain because the pinkies would get caught in the sleeves. I had to roll up the sleeves because of her arms lengths, it pained me to roll up the right one more than the left.
Listening to her cry in pain was heart wrenching to listen to. At this point, I still had not seen anybody but the doctor who gave me a 5 minute debrief the day before. I sat in my room and cried while holding my tiny new baby. The midwives would come in every now and then and if I was crying, I was poured a cup of water and left alone. I was not given a counselor to talk to throughout my entire stay at the hospital. The saddest thing for me was seeing my husband, standing on the other side of the room, too scared to come over and hold his beautiful new baby. It was a huge shock to him as much as anyone as he was the one who after she was born, accompanied her to the neonatal and stood by her while they picked and probed her. I had all of that running through my head that night and I just held my tiny baby and cried.
Nobody offered counselling
Within 48 hours after having my c-section, the hospital discharged us. I had not spoken to anyone but one doctor three hours after Sienna was born in relation to her condition. I had no counselling within my entire stay at the hospital. 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 actually had a meeting with three of the hospitals representatives, three and a half months after Sienna was born in relation to my complaint about the hospitals failure to supply me with duty of care. One of the representatives told me that it was the hospitals role to deliver the baby and anything past that was not their concern. I was given three referrals upon discharge and that was it.
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 were there for my daughter and I.
I fell in love
I can honestly say, from the bottom of my heart that since the very first moment I saw Sienna in that operating room, I fell in love with her. She is my daughter, my little princess. I would cry and still do out of pity for her though. But never because I didn't love her. When I think of all the surgery she has to go through to fix her hands, wrists and arms, that's what makes me cry, she did nothing to deserve what happened to her. 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 ."
My son felt he was not "special"
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 8, 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.
I was upset though when he said to my mother "Nanny, I'm not special because I have thumbs." When I confronted him about saying those words, he cried in my arms. We describe Sienna as being special, in the sense that she is different but at three years old, Kobe isn't big enough to understand yet. A big hug from mum, a kiss for Sienna and some happy words made him feel happy and appreciated.
My daughter's future
My daughter�s future will undoubtedly involve many visit�s to specialists clearly because of her condition that still to this day, does not have a name. It has similar characteristics 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 "Its 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 need.
When Sienna is a about 2-years-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 they both share the same knuckle as the 2nd finger. She also has a vein that is supposed to run from one of the heart valves to her lung to supply it with clean blood. Unfortunately it runs from her lung to her neck and if it has not closed itself by the time she is 3, then an operation is required to close it or to redirect it. We have been told though that there is nothing that can be done about her wrists or right elbow in which the bones are fused in flexion at a 35 degree angle.
It's hard not to blame yourself. Forty percent of your hand movements involve the thumb. Sienna is going to have surgery which will enable her to have thumbs. I keep thinking of the pain, the scars and the casts that will be plastered on her little arms. She did not deserve this. Absolutely no child deserves to be born with a disability. Everyone deserves a clean, fresh, normal start. I must admit to my family, we see her as normal. We do not really notice her hands and arms as much anymore. We see a vivacious child full of life and love for everyone around her. It still touches me though. Every day.
We are thankful
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 peoples 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 people in the last few months now who have limb differences or have children who have 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.
You can comment on Kate & Sienna's story in our dedicated Babies and Children with Disabilities and Special Needs forum.
Read more about Katherine's organisation CHILD here.