What I didn’t expect when I was expecting

Di Guglielmo FamilyMy name is Maria Di Guglielmo. I am married to Tony Di Guglielmo and we have two children; Claudia 11 years old and Lucas J who is 9 and a half years old.

Our son Lucas was born with Tibial Hemimilia. He was placed in my arms after just coming into the world, wrapped in a warm blanket and those gorgeous big eyes blinking away at the lights above us in theatre. It was love at first sight, all over again, he was perfect. Whilst I was in recovery I could sense that something was wrong. The doctors placed Lucas on an examination table, they had their backs toward me and I knew something was wrong from Tony’s body language. I yelled out to Tony “Is something wrong?” and Tony looked and he said “there’s a problem with Lucas’s leg”.  I went numb … What was going on? So many questions, so many concerns, and so much sadness.

The doctor’s unwrapped Lucas from the blanket to show me his leg. All I could hear was people saying “it’s ok, it can be fixed”. As soon as I saw his foot, I knew there was no way that could be fixed – it didn’t even look like a foot. I suppose Tony and I were grieving. A part of us was happy we had a son, but the deformity was not welcomed and acceptable. I was in shock.

The shock and disbelief went on for weeks. I spent my days going over and over all that I did during my pregnancy that may have caused this. I needed answers.  We had our first appointment with Dr Torode when Lucas was four weeks old. I was in a bad state. All I remember him saying was “the surgery is still a good nine months away, take Lucas home and enjoy him”. He was so right, I suppose I was so consumed with the shock of it all that I never looked at Lucas as an innocent, helpless, beautiful baby. My beautiful baby.

Lucas was 12 months old when his foot was amputated. We went through yet another grieving process, because as deformed as his foot was, it was a part of him that had been taken away. Lucas recovered very well. I remember on the third day after his operation he greeted his surgeon Dr Ian Torode from the Royal Children’s Hospital during his morning rounds. Lucas was standing in the hospital cot hanging onto the cot bars in a nappy banging his plaster against the cot bars making a  ‘clunk, clunk, clunk’ noise with a great big smile on his face. Dr Torode took one look at him and said “looks like this little fella’s ready to go home”.

Lucas had his second surgical procedure to fuse the bones in his leg when he was three years old. We were lucky to have had so much support from friends and family, but also the Royal Children’s Hospital would check in also. We had an Occupational Therapist and Physiotherapist from our local council visit us at home on a weekly basis to assist us in any way. They were fantastic! Again, Lucas recovered so well, always with a smile on his face. It’s amazing how resilient children are.

To date I still don’t know why this has happened or how this happens. I suppose in time you learn to stop searching, and just accept it. Knowing won’t change anything, it won’t make it any easier, but now years later I am ready to investigate Tibial Hemimilia further. In our situation we were unaware at birth about Lucas’s limb difference. I believe any expectant parents would still grieve and go through that process during the pregnancy. There’s also the advantage of preparing for it in the way of creating a support network via your local health and maternal nurse, your local council, and in particular Limbs 4 Life.

I wish I knew about Limbs 4 Life before I did. We saw a Limbs 4 Life newsletter when Lucas got his first leg at Orthopaedic Techniques in Fitzroy and I took one home to look up the website. I rang and spoke to a lovely lady at Limbs 4 Life. I remember we had quite a lengthy conversation about Lucas. I remember I kept apologising for being so emotional whist telling her my story. I remember breaking down yet again, not wanting to hang up, because finally I was speaking to someone who truly understood how I felt. I didn’t feel so isolated anymore.

Attending Limbs 4 Life family events has also been wonderful. The kids meet other children with limb differences, siblings meet other siblings, and the parent support is fantastic. I’m so happy I picked up that brochure when I did, and it might be a good idea for all health and maternal centres to offer information to new mums in the same situation. I would be willing to be that voice on the phone or a coffee companion to anyone going through the same situation either pre or post pregnancy.

I love my children equally. Claudia has such a beautiful heart, and is growing up to be an exceptional young lady. Lucas also has a big beautiful heart and has taught me a lot. He is a funny and talented young man.

We’ve been blessed with two beautiful children.

What I didn’t expect when I was expecting by Maria Di Guglielmo