The difference

When we found out that our daughter had limb differences, I searched for other families, other children that had similar differences. I wanted to connect with these families, find out how they had felt during their pregnancy, handled the arrival of their child, other people's reactions, things that had helped them and what had been supportive on their journey.

The hospital were fantastic and referred us to a genetic specialist, who then arranged for us to see a genetic counsellor. Our counsellor was lovely, very understanding and supportive of our decision to continue our pregnancy. The hospital arranged for us to meet with Limb Specialists at the Children's Hospital during the pregnancy. We met with Professors and Surgeons and were handed prosthetics that our daughter might one day want or need to use. We discussed adapting her clothing to suit her difference. Carefully selecting clothes that we could easily alter the sleeves. Dresses instead of pants to accommodate the cast that would be placed on her little foot when she was born to correct her club foot. We wondered how she would eat, use a fork or spoon, hold a cup to drink. Would she be able to ride a bike? How would we explain her differences to our family, her brother, our friends? Would she still be able to attend mainstream schooling? It was completely overwhelming, but we wanted to prepare ourselves and understand what options and support were available and give our baby girl the best possible start in life.

One thing we wanted was to meet other families. Our counsellor mentioned one group the name of which I don't recall, but they had no support groups in our area. There was no website or forum that supported families who were expecting a child with a congenital abnormality, especially a limb difference. I was lucky that I met a lady by pure chance after a Facebook search, whose daughter also had limb differences and she lived locally. She was starting an organisation called CHILD - Children Having Infant Limb Differences to help families like us that were faced with a 'different' outcome than a normal pregnancy. I felt relieved, connected and so grateful. We exchanged emails and then messages via Facebook. We both embraced our daughters difference's and were sure that our daughter's would become life long friends. As Yasminah grew in my womb, my friendship with Katherine grew. I shared her passion of wanting to help provide a supportive place for new families who were diagnosed with a congenital limb difference during pregnancy or after birth. From our personal experiences we envisioned supporting and guiding families through friendship and educating the community about limb deficiency. Katherine was also working on her book and I was honoured to be asked to contribute Yasminah's story.


Whilst it was mentioned during my pregnancy that the Dr's weren't sure 'what the outcome would be for our baby' no one ever mentioned that our baby could die in utero. We were preparing for a life. For her life. The exciting, wonderful life of our second child, our first little girl. It wasn't the dream we envisioned, but the difference to the eventual reality was unfathomable. We dreamed of a life.

I will never forget receiving a message from Katherine asking if Yasminah had arrived yet. Katherine kindly offered me her little girls clothes that she had outgrown. Heartbroken I had to tell Katherine that Yasminah had passed away unexpectedly in utero a few days before.

Katherine still wrote and published her book called 'Our Little Miracles' and she very kindly dedicated the book to Yasminah. I was too distraught to contribute her story, but I'm so very grateful that Katherine still included Yasminah as one of 'our little miracles'. Yasminah is our little miracle. Her story needs to be told. There are approximately 1 in 10,000 children across Australia each year born with a limb deficiency. Sadly sometimes families like mine, don't get to take their little miracle home. There is now a variety of support groups for families that experience limb deficiency. CHILD provide support to parents when they find out about their newborns limb differences. The deficiency can be diagnosed through ultrasound or after birth of the child. Also if the limb loss was acquired through surgical amputation. Through their extensive network of members from throughout the world, the parents never fall short of someone to talk to. This is a beautiful thing! What a difference time can make.

I was honoured to make some very special friends along the way. My CHILD friends are still an important part of my life. I'm honoured that they still involve me in their community and feel blessed to see a small glimpse into their world. I often wonder what our lives would be like if Yasminah was here. If she had of had a chance to the live the life that we dreamed of her having. The child we had, but never had and yet will have forever!

Life is what you make of it

If I have learnt anything from the loss of Yasminah, it's that life is short and to make the most out of each and every moment.

You can shed tears that she is gone,

or you can smile because she lived.

You can close your eyes and pray that she'll come back,

or you can open your eyes and see all she's left.

Your heart can be empty because you can't see her,

or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,

or you can be happy for tomorrow because of yesterday.

You can remember her only that she is gone,

or you can cherish your memory, and let it live on.

You can cry and close your mind,

be empty and turn your back.

Or you can do what she'd want,

smile, open your eyes, love and go on.

David Harkins

Today my husband and I celebrated our love as this day 12 years ago we first started dating. We have been through many up's and downs together but always make the most of what we life gives us. One thing that really helped me the weeks following Yasminah's death was something my husband said to me.

You choose how you deal with it

This simple statement turned my life around. I was in the deepths of dispair and struggling to function day to day. I consider myself to be a positive person and I always try to look on the bright side of life, even after everything I have experienced but losing Yasminah broke me and my spirit and changed me forever. BUT after that statement I chose I how I dealt with it and chose to make the most of our heartache and cherish her memory and let her live on in the lives of others, hopefully making a difference to their life.

Life is what you make of it, so smile, open your eyes, love and go on.

Happy Anniversary to my friend, lover, husband and father of our children. I will always remember the first time we met and the fun we had getting to know each other before becoming husband and wife. You always make me laugh and give me a reason to smile. I cherish the memories we have made together and cant wait to see what the next 12 years will bring I will love you always and forever x x x x x x

The pregnancy, birth and death of our daughter Yasminah Ann

It took me almost 6 years to conceive our son Zach who is turning 2 in July. I was seeing a natropath for 8 months and she regulated my cycles and helped give us our first child. So when I fell pregnant naturally without any intervention only 9 months after Zach's birth, we were over the moon and so incredibly excited.

The pregnancy was quite normal, with the normal early morning sickness but nothing else out of the ordinary.

Until the 20 week morphology scan where they discovered our child had congenital abnormalities. We found out we were having a little baby girl but not until being told our precious baby girl was missing her right hand, had 2 fingers on her left hand, she had clubfoot (where the feet are turned in but can easily be corrected with casts) and they were also concerned about the fluid levels around her brain, we were asked to terminate the pregnancy - one of the worst moments of our lives.

The following week we had an amniocentesis, where a doctor with the guide of an sonographer takes a small sample of amniotic fluid to test for possible defects. When our doctor was sure of Yasminah's location inside my womb, he swabbed my belly with antiseptic and inserted a long thin needle and extracted 15-20ml of amniotic fluid. This procedure carried risks of either infection or miscarriage or injury ot our child. Thank fully it was over fairly quickly and our baby seemed fine. Usually it can take up to 3 weeks to receive the results back but they were able to process our sample within a week and even the doctors were stunned when the results revealed no chromosomal problems, they couldn't explain why or how it happened. At that stage we just couldn't do it. My husband and I turned to our faith, did our own research on what the Doctor's had told us and ultimately decided to continue the pregnancy and when we made the decision we both felt like a huge weight had been lifted from our shoulders. We decided that this was exactly how god had intended her to be and there are plenty of people with missing limbs and they do just fine and just because she didn't have a hand didn't mean we could terminate her life, that wasn't our decision to make. They also couldn't tell if there would be any brain damage as it was measuring just outside normal limits. How could we end her life if she may have a chance of no brain damage. We were determined to give her every chance of life.

I tried to return to work but couldn't face it, so I started maternity leave early to spend quality time with my son and to give my body the rest it needed and our baby the best chance at life. We also used the pregnancy as a chance to prepare those close to us, explaining to our friends and family our unborn daughters challenges. We were referred to the limb specialists and surgeons at Westmead Chidlren's Hospital who were all fantastic and very supportive. Once we told them we were continuing the pregnancy they had appointments lined up for us so we could prepare ourselves and plan ahead for our daughter's birth. I was considered a 'High Risk Pregnancy' and was under constant monitoring, every 2 weeks I had an ultrasound to monitor her growth. I also had an MRI at one stage to rule out a diaphragmatic hernia, but this was given the all clear too. As the pregnancy progressed everything seemed to be getting better and the outlook was improving, only one foot was turned in and she had 3 fingers not 2 she was a fighter.

It was discovered that I had Polyhdramnios where there is excess amniotic fluid in my womb. The extra fluid in the womb can make it difficult for our baby to settle head down into my pelvis. So if my waters were to break, there is a danger that the umbilical cord would be pulled down into the vagina in front of her head. I almost went into preterm labour at about 28 weeks, but was put on prescribed tablets to reduce the amount of urine our baby was producing thereby reducing the amniotic fluid. I continued to take them until I was 34 weeks when I was admitted into hospital after a routine checkup and ultrasound.

I had noticed her movements decrease and thought that maybe she was going to come early into the world - they put me on the CTG to monitor the contractions and her heart rate and it wasn't looking good. It was my wedding anniversary, my husband was at work, my mum was looking after my son at home and I was all by myself being told I would have to be admitted into hospital because things weren't 'looking good' with my baby.

We were told that the CTG traces were 'non reactive' and they weren't sure why. I would need to be admitted so that I could be closely monitored. I would continue to have CTG's twice a day leading up to her birth. Everyday her heart seemed to get stronger - they didn't really know what was wrong with it or if they did they didn't tell us. She started putting a lot of weight on and the fluid was OK. I was otherwise in perfect health - no protein, perfect blood pressure and I felt OK. After 2 weeks in hospital they let me go back home as I didn't live too far from the hospital, but had to come back in everyday to have the CTG or if I had any concerns. I stayed home 5 days before I was readmitted at 37 weeks and 1 day, because the CTG trace was worse than it had previously been and it was also getting harder for me to feel her movements again as the amniotic fluid was increasing again. So that night I was on the CTG monitor for almost 2 hours before the registrar re-admitted me - we had our son with us- we hadn't had dinner and they wanted me to stay but I convinced them to let me take Zach home, get him into bed and wait for my mother in law to come over whilst my husband and I headed back into hospital. They said they would do another CTG when I came back in. On arrival I was set up in the room opposite to what I had been staying in. I was all hooked up to the CTG and it was really good, very re-active and the midwives said it was best I just stay in hospital for the rest of the pregnancy.

The next morning I wanted the CTG first thing so we could find out what was happening and plan to deliver her the end of the week - that morning my team of Dr's came in and decided that she was moving well and seemed to be very active and she was growing too so would see me again the next morning. There were a few dips or decelerations in heart rate that morning and I was concerned, and raised these concerns with the medical staff but they re-assured me. They wanted to get her as close to full term as possible as did I. That was roughly 9:30am the 24th of March 2009.



I last felt her move just after lunch. Yasminah gave me one all mighty big kick and I remember thinking something wasn't right then. I tried to lie down in my hospital bed to sleep, but couldn't so got up and went down stairs. First I went and bought a colouring book to surprise my son with that night when he came in to visit me, then I went to the Internet kiosk in the hospital to let my friends know that I was OK and back in hospital and it wouldn't be too long until we finally meet our little girl. I still hadn't felt her move so I went and got a strawberry milkshake as that always got her moving. Still there was nothing. Back up in my room I poked and prodded at my belly to get her to wake up. Now I definitely knew that something wasn't right. I went and got some ice water and on the way back to my room I walked past one of the midwives and she asked if everything was OK I said yeah I was just tired. I drank so much water and still couldn't feel her move. I told my husband over the phone when he called me and he said she is probably just tired and we both needed our rest. I said I would call the midwife in to check everything was OK. I buzzed them and they said to try the ice water and everything, I explained that I had already tried that. They then went and got the portable Doppler out and couldn't find the heartbeat, but lately they had trouble even picking it up with the CTG because the excess fluid made it hard. The midwives did all they could to reassure me, they went to get the CTG and still couldn't get it, so they called the registrar on duty. They then brought in the portable ultrasound machine and after what seemed like forever the Doctor said to me that "I have checked everything and I cant find the heartbeat" she said "the baby hasn't moved her arm is still in the same spot resting above her head"....just how I sleep. I tried to hold it together. I couldn't believe that we had got so close for her to die right there in the hospital with all my doctor's and the medical staff around me, they were supposed to look after her. Why didn't they deliver her earlier after I raised my concerns, she was OK in the morning.

At the time when they told me I was alone in my room and my best friend who was also pregnant and due later that week was calling me, I couldn't answer the phone. She knew something was wrong. I had to call my husband and tell him over the phone what had happened. He had just got home from work and was getting ready to come in with our son. I told him to come alone that she had died and couldn't say much of anything else, another horrifying moment in my life. Only that morning everything had been OK. How could things change so quickly? The doctor's always said to us that "they didn't know what the outcome would be for the baby", but I always thought she would be born and maybe not survive life, but it never really occurred to me that she would die inside me. I never even knew it could and did happen! I thought I would have some warning if something was wrong pain, bleeding, my waters breaking anything, not nothing! Why didn't they ever say "Your baby could be stillborn" I would of preferred their honesty. I remember once during my hospital stay overhearing the doctor's and midwifes outside talking about me and they were asking why I had to be in here and the doctor said in case the baby dies! That made me so angry at the time that they wouldn't say it to me. Maybe I was naive to think that it was all going to work out.

They let me go home and come back the next day to be induced.
We had another ultrasound to confirm that she had indeed passed away. My husband was allowed to stay with me in hospital. I was given gel at 2pm and then again 9:15pm and was told they would break my waters the next day. I had to be monitored closely through the induction because my son was delivered by emergency c-section after a 21 hour labour (we almost lost him too) and they needed to make sure that my scar didn't rupture and I didn't progress too quickly. I took some sleeping tablets at 2am to try and get some sleep. To my shock and surprise my waters broke naturally at 3am. My poor husband woke up with a fright as he was in a bed next to me and he said it was like someone turned on a fire hydrant or a waterfall, there was just so much water. We were so glad that didn't happen at home

They then took me down to the birth unit where I had an epidural. At 9:58am on Thursday 26th March 2009 I silently delivered my beautiful sleeping little angel, my baby girl Yasminah Ann. She was just beautiful and perfect and she looked so peaceful. Yasminah was really long 50cm, she weighed 2.38kg. Beautiful jet black, thick curly hair and she had the same cute little button nose as her brother did as a baby.

The midwives were fantastic, so supportive and understanding and will forever be in my hearts for making it as relaxed as possible. They are the memories I have. I was able to have a natural birth and felt like I had achieved something. It was a very different experience from my son's birth. Zach was born by emergency c-section after a 21 hour labour as he was in distress and had passed his meconium and was inhaling it. I really wanted to have a natural birth with Zach and with Yasminah I did it - all on my own with no medical intervention. It was really calm and so quiet.

They let us bathe her and then they brought in some dresses for us to choose. I didn't bring her clothes in and we didn't have our camera charged. Everything just happened so fast and I didn't think about these things, but wish I had or someone had said to me bring your camera and clothes for her when we left the hospital the first time. Only two relatives from my husband's side wanted to see her, which at the time I wasn't very comfortable with and spoke to the midwife and asked if they could show them Yasminah in another room and then bring her straight back to me. I wanted to be the 'last' to hold my little girl in my arms. Now I feel a little hurt that no one in my family wanted to see or meet her. She was and will always be a part of our family. Some friends later told me that they would of liked to have met her but the thought never even crossed my mind at the time to ask them.

The midwives gave us a book with a handful of photos that they took of her inside it and they took her hand and foot prints and a lock of her thick black wavy hair, she even had little ringlets at the back just as I did as a child. We had the book with the special keepsakes, the blanket we held her in, a little white teddy bear and a box to keep everything in that had a beautiful blue butterfly hand painted on the lid.

She fought as long as she could but just didn't make it all the way. I take comfort in the fact that she passed away peacefully in the comfort of me her mum and didn't suffer. I think she wanted to spare us from seeing her in pain as it would have been a very challenging life for her, but it doesn't mean I don't wish that she could be here with us today.

I feel blessed to have been able to hold her for 37 weeks and 4 days and proud to be her mum. We gave her a chance at life that alot of other people wouldn't of. She was very much loved and wanted by all those around her and not a moment in my day goes by that I don't miss her or think about her or what might have been.

We had a Post Mortem performed to try and find out an exact cause, but alot of the time they just cant tell. The results came back as 'no known cause'. They put it down to her abnormalities. My Doctor's came in and saw her after she was born and they got upset too, they said that she was such a fighter and they were amazed that she fought as long as she did. They also admired my husband and my strength and love for each other and our child. They said with everything that happened we always remained positive, we always held onto hope.

I hope that none of you ever have to go through this. It still breaks my heart when I hear of other parents who have gone through a similar experience.

1 in 4 pregnancies end in stillbirth or death within the first 28 days of life

I'm not sure what would of happened if they had induced me earlier. I might have my baby girl here with me who knows.

I'm so thankful and lucky that I have my son, I don't think I could of got through this without him. He has given me lots of love, hugs and kisses just when I need them most. I also have a wonderful supportive husband, we love each other very much and I think that this whole experience has only made our love and relationship stronger.

If you are still reading thank you for letting me share my journey. Take care of yourselves and your loved ones and if you are pregnant or TTC know what an amazing gift motherhood is. Keep the BFP, ask for ultrasound pictures, treasure each kick, take photos of your belly and enjoy every memory - sometimes memories are all we have to look back on.

Much Love Bec x x x x x x