October 14, 2015

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diastrophic dysplasia Awareness › Dwarfism › HeroParent › Parenting ›





 

We are two mothers who created Baby Hero to improve the lives of young families around the globe. With every purchase of our gorgeous, organic baby clothes, you fund life-saving medical products for mothers and newborns in need and provide dignified employment to marginalized communities, making an extraordinary difference in the lives of others. 

~Alicia & Samar, Co-Founders, Baby Hero

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Meet Hero Parent : Nicole Luk

Nicole Luk is a remarkable mother to three beautiful girls – Lana Joy, Madeline Hope and Briella Faith. Maddy and Briella have diastrophic dysplasia, a rare genetic condition that affects cartilage and bone development that leads to dwarfism. October is Dwarfism Awareness Month, and we asked Nicole to share her family’s story. A prolific blogger, Nicole has been chronicling her journey since the birth of Maddy in 2010, and has become an eloquent, informed voice for the diastrophic dysplasia community.

I love the Baby Hero business model. Women in privileged countries who have had the benefit of great medical care get to buy gorgeous clothes for their baby that help women and babies in underprivileged countries at the same time.

I grew up in a small city called Wollongong, just south of Sydney, Australia. My family was happy and close-knit so I was strongly influenced by them and their values. We attended church three times a week growing up and my dad and brother are both ministers, so Christianity has had a strong influence on me. My belief systems have been one of the most influential aspects of my life. 

I had a happy and relatively stress free childhood so I can't think of any particular "defining moment", however looking back I can see I was drawn to people with disabilities. When I was a teenager, I met some distant relatives and one of them had a boy who was about 7 or so, and he had a physical disability. I felt an instant connection with him and spent the entire time playing with him. Later when I was 16, our school required us to do a week of community service and I chose to do it at a school for children with special needs. Looking back, I can see that maybe I was being prepared to parent my own unique kids. 


Joy, Hope and Faith are my girl's middle names. When I was expecting my first daughter Lana (7), I wanted to give her a first name that we loved and a middle name that was a family name. As my middle name was Joy (after my grandmother Joyce), we passed that middle name on to her. When I was expecting Madeline (5), there was a time we thought that we might lose her. With that, we had to choose to keep hoping, since we had no guarantee for a happy outcome. Because of that, we changed our plan and used Hope for her middle name instead of a family name. When we were expecting Briella (23 months), we decided to continue this new tradition and her middle name is Faith. 


Their middle names definitely suit them well - Lana has brought so much joy into our lives. She is a beautiful and bright girl who is our princess and the apple of her daddy's eye. Madeline is feisty and has a magnetic personality - people flock around her every time we go out. Briella is mostly calm and easy going like Lana, but she is also strong and stubborn like Maddy. 


At Briella's dedication, I said "With Lana, we had the joy of having an easy and perfectly average baby. With Maddy, we had so many worries and fears that at first, we had to choose to hope. That hope grew and grew as we saw her doing things the doctors said she would never do, and as we grew in confidence in parenting her. With you, we never had many of the same worries – we knew that you would figure out how to use those fingers that do not bend. We knew you’d walk and talk – maybe a bit slower than other babies, but in your own time you’d get there. With you, we have faith."


When I was pregnant with Madeline, I had only just had a miscarriage a few months earlier, so I waited until that 13 weeks to breath a sigh of relief that we were "safe". It was at 14 weeks however that we learned she had a high risk of Down syndrome. I believe that every child is a life worth living and came to grips with the possibility of a baby with Down syndrome but at 17 weeks, we were told it was not that but a skeletal issue (we didn't know the exact diagnosis at the time). We learned that there was a high possibility of stillbirth, or that she would survive until she was born and then not have the lung capacity to sustain life.

The rest of the pregnancy was extremely difficult. We knew we wanted to carry to term to give her the chance of life if she did have a non-lethal condition - but my mind was racing ahead asking questions like "should we start looking into funeral arrangements?" We found out at 30 weeks that it was "probably non-lethal" but we had no guarantee until she was born. It was incredibly stressful and I turned to blogging both as an outlet for my emotions and as a way of keeping family and friends informed about what was going on. Bernard is different than me in that he only deals with each thing as it arises rather than worrying about future possibilities that may or may not eventuate. Because of this, I think he didn't have the same trauma as I did when I was thinking about funeral plans - but on the other hand, when Madeline was born, I had already processed my emotions so I was able to hit the ground running. We have both found a lot of comfort in our beliefs. I've also joined numerous online support groups so that I can talk with parents who are further down the road than I am.

On Christmas Eve, 2010, just weeks after Maddy came out of NICU, I wrote on my blog about how innocent I had been to the depth of pain and heartache that motherhood could and would bring me. A year earlier, we had Christmas in Penang, my husband's 30th birthday, we were newly expecting and were picturing another easy pregnancy and easy baby. What we got was neither of those! The two darkest times that we've gone through were the pregnancy, and NICU. The pregnancy was rough because we had no idea if she would survive. I was jealous and even angry that other people were having healthy babies (particularly when you read stories of parents who neglect or abuse their children) while we didn't even know if we would bring ours home from the hospital - but we loved and wanted her so much. I tried to learn as much as I could and tried to stay positive, but it wasn't always easy! 


Once Madeline was born, I thought that the worst would be over. I wasn't prepared for how long she would be in NICU though. Our doctors were extremely cautious with her which is both good and bad. She was healthy but they were concerned about her airway, but couldn't/wouldn't do the necessary tests so decided with the lack of results, to just keep her in and let her grow. The policies at the hospital were (in my opinion) heartless and not in the best interest of the baby's social and emotional development - particularly babies like mine who were full term and spending months in there. Firstly, they had very strict visiting hours and parents were only allowed between 3pm and 8pm daily, and secondly no other visitors were allowed - meaning that Lana and Madeline only met each other once in that time. Madeline was tube fed on schedule, not held often, and frequently left to cry without being comforted. We debated taking her home against medical advice and in some respects, I still regret not doing so. I believe there are some emotional scars that she still bears as a result of this time - however we'll never know how much is her personality and how much would have been different if she'd spent those first four months in a family environment.

We knew even before conceiving Briella that she would have a one in four chance of having diastrophic dysplasia and we felt that even a life with diastrophic dysplasia is a life worth living. That said, I was convinced she wouldn't have it. When we found out around 14 weeks that she did, it took some time to get our heads around it. I was very scared of reliving the traumatic experiences that we had with Maddy, particularly NICU - however because both we and our doctors are more educated now thanks to Maddy, everything has been far easier. To me, Briella's experience (both individually and medically) has been almost ideal - because we were dealing with most of the same issues but all of the fears and ignorance were gone. 


Diastrophic dysplasia (DD) is a rare form of dwarfism, and it is often quite debilitating. People with DD are short statured (they can range in height from less than 3 foot to more than 5 foot) and often have problems with joints and mobility. Also common with DD is cleft palate, scoliosis, fingers which do not bend, a thumb which is set back, hearing loss and clubfoot. Most need some kind of mobility aid - usually a walker or crutches for shorter distances, and a powered wheelchair or scooter for longer distances. The hardest thing about the diagnosis is that it often comes with joint degeneration, early onset arthritis and chronic pain - but there are ways to manage that. People with DD are not affected cognitively or mentally and so can do anything that their bodies allow them to. I know of adults with DD who are doctors, bankers, teachers, farmers and artists. 



And then there are the lighter moments. The funniest time was when Lana was on the bus in Hong Kong. A lady was talking with her and Lana was being cheeky, loving the attention. The lady asked Lana "How old are you?" Lana replied "I'm 100 years old but I look much younger because I have dwarfism!"

One of the strongest values we have in our family is "Always tell the truth". It goes for both the kids and also the adults. I always try to be honest and open with my kids. I don't tend to lie to them or trick them, even about things like Santa - they know it is a game we play (we don't denounce or ignore Santa, they just know it's us playing a game). When it comes to dwarfism, I've tried to talk about it frequently at home, as soon as we knew that Madeline would be affected by it. I want my kids to be able to talk with us about anything and I think that starts with us being honest and open with them, at an age appropriate level of course. I always tell my kids what to expect when it comes to blood tests, immunisations and surgeries rather than breeding distrust by tricking them into it. It's not always the easy way, but I would hate for them to not trust me.

I want the same things as any other parent - for them to be happy and to find something about which they are passionate. I want for all of them to reach their full potential and to be surrounded by people whom they love and whom love them. I want them to grow up to be wonderful people who are kind and polite, but also with a bit of stubbornness and spunk so that they can do the things they want to do.

October is Dwarfism Awareness Month. There are hundreds of thousands of people in the world who have dwarfism. Dwarfism can occur spontaneously in any family - although some forms (like diastrophic dysplasia) require both parents to carry the gene. People who have dwarfism are just like anyone else, but they happen to have a body which is smaller and doesn't always work so well. People with dwarfism are almost never affected cognitively and they can have a wide range of job possibilities, from doctors and nurses to lawyers, teachers, artists, musicians - just about anything that an able bodied person can do. They can drive cars and become biological parents of children both with and without dwarfism. 

It can be tiring for people with dwarfism to often be the centre of attention whenever they are out in public - getting both good and bad attention. It's fine and natural to notice someone with a visible difference, and children in particular will ask questions out of curiosity. If you are a parent and your child does ask these questions, your response will teach them how they should respond to people with visible differences. If you shush them and avoid answering, this might teach them that they should be ashamed of differences or a voice thinking about them. I encourage people (both kids and adults) to ask questions - most of the time they are curious, not mean or rude - and by answering them, they will learn that we are all made differently and that's OK. 

Follow Nicole's journey on her blog and her Facebook Page

 


Aquin Dennison
Aquin Dennison

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