Wednesday, March 20, 2013
This won't be a long post, I just wanted to share two new videos of Maddy.
First of all, this is Maddy at the park on the swing. She can "swing by herself" now ;)
Secondly - Maddy's speech is doing fantastically lately! Also she is singing a million different songs. Here is her favourite (which she sings every time she sees the golden arches!)
Posted by Nicole at 11:15 AM
Thursday, March 14, 2013
The other day on one of my posts, someone asked the following question:
Am not asking this in a rude way but why you in HK? Wld the medical services not be better in Aust or western country. Or does the Asian medical system have the best facilities?
I figured I would take some time to answer the question here.
We first moved to Hong Kong over 6 years ago now. Originally when we moved to Hong Kong, the plan was to stay for 2-5 years. Currently our plans are "indefinitely". We've been through so much as a family in the last six years - both of our kids are born here. We moved over as newlyweds and most of our life together is here in Hong Kong. It has truly become "home" to us.
When we moved to Hong Kong, some of our reasons were the following:
- Bernard's dad is here. He is significantly older than Bernard's mum and my parents and his health is not great. He has little family here in Hong Kong - so being here would be good for him.
- Hong Kong is a great place for people early in their careers. The wages are high and tax is low. The cost of living however is quite high - so we aren't getting "rich" here by any means! But we might have more spending money here than we would back in Australia.
- If our children were born in Australia, they would not get HK "citizenship". If they were born in Hong Kong however, they get dual citizenship which gives them more opportunities when they grow up - it will be easier for them to live, work or study in either place if they so choose.
- There is a small, local church that we are involved with over here. It has been great being involved in a Chinese church and we may not have had that opportunity back in Australia.
When Maddy was born, we discussed whether it would be better for her to be in Hong Kong or Australia. At the moment while she is young, it doesn't really matter so much - but I think that as she ages, we may find that it is harder for her to achieve independence in this society. I do think that Australia is a better/nicer environment for people with disabilities or special needs.
So far, the medical care that we have had in Hong Kong has been good. I have had my complaints - which mainly fall into two categories. Firstly, they are SO SO SO overcautious with EVERYTHING... they plan for the worst-case scenario. While this led to Maddy's four month NICU stay (which I still to this day believe was unnecessary), I do know that she has been safe. I have seen other hospitals in the US which were the opposite, verging on not cautious enough, and if I had to choose, it is better to be overcautious (although I hate to admit that). Secondly, the medical system is not as "friendly" here as it is back home - particularly for the parents. In other places, the parent is considered to be a part of the medical team. The doctors will discuss various options with them and include them in the decision making process. Hospitals welcome parents and provide bedding for parents, encouraging the parents to spend as much time with their children as possible (even in NICU). Here sometimes I feel as though I'm continually fighting with the doctors because I will not just accept everything that they say as gospel truth and sign on the dotted line - and I have often felt as though we are not truly even welcome at the hospitals.
I do recognise that my "complaints" in some ways are more about me than they are about Maddy. I am used to things being a certain way and I fight against the system. I've had so many frustrations - but for local parents who just accept that it is the way it should be, they are perfectly fine with it.
So far, Maddy's medical care has been mostly routine. She has not needed any orthopedic surgeries yet (that is, surgeries on her bones). That said, I know that with her scoliosis, that will change soon enough.
Spinal surgery is no easy surgery - it's comparatively high-risk and requires long periods of rehab. Knowing that this may be an option for us, I have considered the possibility of having this surgery performed overseas, most likely in Australia (since we are citizens and have family there who we could stay with). You would guess that the medical care would be as good or better, plus it would be much "easier" for me as a parent. The only concern would be that our family may need to be separated for this period of time while she is preparing for and recovering from surgery.
At our last orthopedic visit however, we met with a British orthopedic surgeon who was temporarily at Hong Kong working at the university here. He was an amazing doctor and it was great for me to have a doctor with a more Western approach. He was friendly and warm and talked about his own daughter back in the UK who is the same age as Maddy. He is the one who told me that spinal surgery is pretty much a definite - the only question was timing.
Since we got to chatting, I poured it all out to him - my frustrations, my questions of whether to go back to Australia for the surgery, not wanting to go through that here... I told him how the doctors here are so cold and don't really care about your feelings.
He really helped me to put things into perspective though. He told me "When I first came here, I was shocked by some of the ways that the doctors talk to patients and their parents, but as I came to work alongside them, I realised that they really care about their patients. They relate to them in a certain way because that is the culture here - but that does not mean that they don't care."
He also went on to say "I've worked with many orthopedic surgeons all over the world - and the team here is one of the most dedicated and skilled that I have worked with. In fact if my daughter had a congenital scoliosis, I would bring her over here from the UK so that these doctors could operate on her."
After that discussion, I realised that while Australia may be the better choice for me, it might not be better for Maddy. It certainly would not be better for our family as a whole to be separated for that period of time (at least as long as we are living here).
That all said, there are some extremely highly skilled surgeons in the US who have a lot of experience with dwarfism and with diastrophic dysplasia more specifically. We plan to consult with one when we go over there in June. And I would possibly consider weighing up the pros and cons regarding doing the surgery there instead of Hong Kong.
Eventually, we might move back to Australia - but for now, Hong Kong is home and all of Maddy's needs are being met here. She is growing and thriving. I'm sure she would also be if we were back in Australia or even in the US - but for now, this is where we are, and it's good :)
Posted by Nicole at 1:24 PM
Saturday, March 9, 2013
I've been going to a mum's group for the past few months. It's associated with a nearby church, and while it's not my home church, it has provided me with some wonderful fellowship and some new friends who are already very dear to me. This past week, they asked me to share a bit about Maddy's story, and since I already typed it all up, I figured I might as well post it here as well. Enjoy!!
As a brief introduction, my name is Nicole and I have been in Hong Kong for 6 years. My husband is originally from here, but grew up in Australia. We moved over as newlyweds and planned for our kids to be born in HK so that they could have dual citizenship. It took us a year to conceive our first daughter, Lana, so when she was only a few months old, we started thinking about adding another child to the family – figuring that we would rather have them too close together than to have to worry about not being able to conceive again.
I fell pregnant quickly the 2nd time around but had an early miscarriage at only about 6 weeks pregnant. A few months later, I fell pregnant again.
As many people do (particularly after a miscarriage), I held my breath through the first trimester figuring that when I got to 13 weeks, everything was pretty much safe. I looked forward to ultrasounds, seeing them only as a chance to see our baby and to find out the gender.
At 14 weeks pregnant, however, we went for the routine Oscar screening test and the results were not good – we were told we had a 1 in 7 chance of having a baby with Down syndrome. We were advised to consider CVS or amnio if we wanted to know for sure.
For us, termination was not an option. I never even considered it and told the doctor as much. That said, my husband in particular wanted to know. He felt as though if we knew for sure, we could prepare for what was to come rather than to have to worry and wonder for the next six months of the pregnancy. After much discussion and prayer, we decided to do the amnio (as the risk was lower than CVS) – but we still had to wait another three weeks until I was 17 weeks.
At this stage, I did a lot of research about Down syndrome and even came to accept that we may have a child with this condition. I felt confident that we could “handle” that situation, if “we found out the worst”. We were still hoping that the baby didn’t have Down Syndrome and figured that if the odds were 1/7, that still meant that there was a 6/7 chance that everything was fine.
At 17 weeks, we went back to the ob/gyn to do the amnio and as the doctor was doing the ultrasound to get ready for the test, he told us that he could tell that the baby had deformities in the skeleton, that this was probably the reason for results of the Oscar test, and that his recommendation was to not do the amnio as it might not be able to diagnose these issues. He told us that these conditions were outside of his area of expertise and he started calling around doctors who specialised in prenatal diagnostics. He got us an appointment to see another doctor within the next 3 hours.
At the second appointment that afternoon, we learned that the baby did indeed have skeletal abnormalities and that it was possible that her condition was “incompatible with life”. The doctor refused to tell us the odds saying that it could go either way – she said she would only be able to tell us at around 30 weeks pregnant (another 3 months away!) whether she thought that the baby would be “viable”. She also told us that the chances of our baby being “normal” were virtually nil.
Of course I went home and did what no parent in our situation would do: I googled. I learned that with babies diagnosed with skeletal dysplasia, 25% are stillborn, 30% survive less than 6 weeks, and the other 45% have a non-lethal form of dwarfism. The two outcomes seemed to be complete extremes: either the baby would not survive, OR she would have a disability that was purely physical. What I didn’t know then is that usually, the earlier in pregnancy that these issues are detected, the more severe the situation is – and that most non-lethal forms of dwarfism cannot even be detected on ultrasound until much later, so our "odds" actually were even worse than that.
This period of time was without a doubt one of the most difficult in my life. Some of the thoughts I was struggling with were “why me?”, and “I don’t want to carry this baby for nine months only to have to say goodbye”. I knew that God “could” heal – I did and do believe in miracles – but I also know that sometimes things do not go according to our plan. A few scriptures became my rock at that time – the thing that I held to and trusted in without knowing what the outcome would be.
- Jeremiah 29:11 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."
- Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
- Genesis 50:20 You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.
These scriptures (amongst many others) reminded me that God has a plan for our lives, a plan that exceeds our own plans. Not only did He have a plan for our lives, he also had a plan for our baby’s life and that whatever happened, God promised to bring good things from the situation.
As the pregnancy progressed, things started pointing towards a non-lethal form of dwarfism, although the diagnosis wouldn’t be confirmed until after she was born. At birth, Madeline Hope was diagnosed with a form of dwarfism called diastrophic dysplasia (if anyone has ever seen the TV show “Little People Big World”, this is the same form that the Dad in the show has). Because of her dwarfism, she was born with extremely short limbs, a cleft palate, joint deformities and some breathing issues. She spent her first 4 months in NICU and has had one surgery to fix her cleft palate. She also has a significant scoliosis that will require spinal surgery in the future.
At the moment, she is 2.5 years old and is the height of an average 6 month old. Her estimated adult height is around 3-3.5 feet tall (the current height of my 4.5 year old). She will continue to need different therapies and surgeries to help her to develop the way that she should, but she is an amazing child and is such a blessing to our family and to everyone who meets her.
Even though her little fingers cannot bend, she can do everything that other 2.5 year olds can do. She can stack blocks, draw simple shapes and use scissors. We were told when she was born that she probably would only “walk to transfer”, that is – she would mostly need a wheelchair, but she would be able to walk from her bed to the wheelchair, or from the wheelchair to the sofa. But not only can she walk around the house, she loves to go to the playground and can go up and down stairs by herself, and up and down the slide. Her speech has been delayed by the cleft palate, but now that she’s had surgery to fix that, she has been catching up really quickly. She attends a regular kindy and is doing fantastic – far better than we expected or could have anticipated. Much of that is due to her fierce independence and determination to keep trying to do something until she gets it right.
Before we had kids, I would have never expected that life would have taken the turns that it has. We’ve had our ups and downs with it all, but through this situation has already brought so many good things into our lives. It has strengthened my trust in God and has given me many opportunities to share with different people. I’ve kept a blog since I was 17 weeks pregnant and through that, I’ve been contacted by numerous people who were going through similar pregnancies. And while I wouldn’t have planned this for my child, I am thankful because I know that God did have a plan.
Psalm 139:13-14 For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
Posted by Nicole at 9:43 PM
Saturday, March 2, 2013
Since we were in Australia last July (which I now realise I never even mentioned on here!), I have been on the look out for a small plastic bike that would be suitable for Maddy. These are common and cheap in Australia, and they are very low to the ground which is perfect for short legs.
On arriving back in Hong Kong, however, I found that these bikes are not available here at all. I've kept an eye out and have been to so many different stores, but none could be found.
A month or so ago, however, I saw someone posting one on a facebook group for free. Another mum had jumped on the offer, and I commented that we'd had a hard time finding that kind, could she let us know where she got it from etc... The mum who was originally going to take the bike kindly passed it on to us and it is perfect for Maddy.
Here's a short video of Maddy riding her new bike at the park:
And if anyone else in Hong Kong has another one of these that they'd like to sell or get rid of, please let me know as Maddy has a friend with dwarfism who would also love one!
Posted by Nicole at 10:17 PM
Thursday, February 28, 2013
The past three months have been a busy time for our family, the most notable updates about Maddy are as follows:
1. In November or so last year, Maddy had an MRI done of her hips and spine. Orthopedically, they are her two biggest areas of concern. Her hip joints are shallow and the head of her femur is flat and misshapen. The ortho was previously talking about the possibility of surgery, but after this last MRI, they have decided that there is nothing they can do for now. Any possible surgical interventions on her hips have the possibility of making things worse rather than better. The "good news" is that Maddy is mobile and healthy so her bad hips are not currently affecting her. The "bad news" is that they will probably deteriorate with age and use and it is not unlikely that she will end up needing a hip replacement at a young age (maybe 20's-30's, but as with everything, it is wait and see).
2. The above picture is Maddy's spine (with a couple of my fingers helping her to stand still ;) ). Even to the untrained eye, there is an obvious kink right around where the lungs are (the "thoracic spine" is the technical term). This scoliosis is currently at about 32-33 degrees, and to quote the amazing ortho we saw at our last visit: "This spine will definitely need surgery sooner or later". Spinal surgery is pretty scary and to be honest I had a bit of a freak-out after hearing that. I hoped and prayed that Maddy would avoid the spinal complications of her dwarfism - but ultimately, this is the situation and we will deal with it as we go. I should write a big long post about this particular ortho though - he was a British guy here for 6 months or a year, and we had a long talk about the Hong Kong medical system and it's pros and cons.
3. We have always known that since Maddy has a restricted rib cage, her lung capacity is also reduced and so she is more at risk for complications of the flu or other colds. Her scoliosis also affects her lungs, since it is in that region. She seems to have made up for that with a fantastic immune system and has mostly avoided just about every sickness that has made it's rounds. At Christmas time, however, we all were down with a nasty cold. Maddy got it too and was pretty miserable. One day, she slept 23 hours and we noticed her breathing was very fast, with some "insucking" or "indrawing" as they seem to call it elsewhere (see http://www.youtube.com/watch?v=C3lgqVf1fVU if you want to know what I mean). We took her to our GP who advised that we should take her to hospital. I could write another long post about that - but basically the infection had spread to the lungs and she had bronchiolitis. 5 nights in hospital and she was rearing to go again. It was our first private hospital stay and compared to the public hospital, it was heaven!
4. Maddy's speech is really coming along. She's still delayed but she is doing AMAZINGLY. It has been such a concern over the past 2 years really, it is good to see her catching up. Her understanding is fantastic for her age, her vocabulary is about average - her main issue is with articulation (ie, she doesn't form the sounds correctly and can be difficult to understand). Even that is improving though... it also warrants another post at a later date...
For now though, I think this will suffice as a very general overview of what's been going on medically and developmentally since last time :)
Posted by Nicole at 10:00 AM
Wednesday, February 27, 2013
Three months! That's how long it's been since I've updated this blog. In the beginning, I started this blog as a way to record the pregnancy with all it's ups and downs. I've wished that recording our experiences and making them public would help other people - and it has. I've had multiple people contact me through this blog saying things like "My pregnancy was similar to yours, and reading your story has given me hope". At least one person was given a prenatal lethal diagnosis by medical practitioners, but questioned that by comparing her measurements to mine at a similar stage in her pregnancy. The doctors were wrong and that beautiful little girl now also has the middle name of "Hope".
A lot has happened during the past few months and I've given a lot of thought about the direction that this blog will take. In the beginning, I spent so much time on here, writing updates and recording everything. As Maddy grew and there was less "medical news", the updates became less and less frequent. Simply put, I've had less to say.
I have thought of closing the blog down - but I couldn't do that, not after knowing it has helped people who were in similar situations to where we were right on three years ago. (It was 3 years and 10 days since I first heard the words "skeletal dysplasia", and 3 years and 3 days since I first wrote this first post.) So I've decided this blog will stay online for now.
I don't want it to die completely either though - although I can't afford the time that I used to spend on it. I have realised that I am not a "blogger". I'm not a great writer. I ramble on too much. I don't "change my theme" or use the right "buttons" and link up with "throw-back thursday" or "wordless wednesday". I thought of doing it but it's just not what this blog is about.
So I will continue to update about Maddy's current condition, I may post videos and photos from time to time as well. Hopefully more frequently than every 3 months - although I'm not going to be watching the calendar either. But I do welcome a friendly nudge if it's getting too long since the last update ;)
Posted by Nicole at 9:50 PM
Wednesday, November 14, 2012
For many people with dwarfism, their most valuable "tool" is the humble step stool. We have a few around the place, mainly for Lana to reach the bathroom sink to wash her hands. This one ended up being used for a footstool at our keyboard and as such, lives in the lounge room. The kids have been using them as seats, but tonight, Maddy figured out that with the stool, she can manage to climb onto our sofa. Not a small achievement, given that the sofa is around the same height as Maddy's nose!
I think I need to get more of these stools, and also figure out how to make the bottom slip-proof. We need to be very careful to hold the stool while Maddy is climbing, otherwise it goes flying from underneath her. I welcome any suggestions!
(and how's that? No posts for six weeks and now you guys get two in a day ;) )
Posted by Nicole at 11:13 PM