Saturday, March 9, 2013

Sharing at Mum's group

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.

  1. 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."
  2. 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.
  3. 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.

1 comment:

  1. Dear Nicole,

    Thanks for your sharing, your words are not only touching but also encouraging to mum like myself.

    My name is Lima, I gave birth last year, my baby Jeremy is 1 year old now. I planned to join Island ECCs moms group but never had time to go. I'm thankful that your blog was shared in the communication, I'm greatly encouraged by your words.

    Jeremy was a pre-term baby,and his birth weight is low 1.8 kg. I had pre-eclampsia at the end of my pregnancy, till this day no one knows the cause. After Jeremy was born, his blood sugar was extremely low and was transferred to NICU and stayed there for a month. That month is hard, as you have been through the same experience I can feel what it would be like for you to be there for 4 months!

    During the checkup in NICU, they found out he had brain injury, but no ones knows how it happened, could be before birth , during birth or after birth. The day I gave birth I felt a bit uncomfortable, I thank God I went to see my doctor immediately he suggested we need to take him out on the day, because he is distressed already. It's probably at some time he was lack of oxygen which caused the brain injury.

    After Jeremy was discharged, we were running all over the place for therapist, doctors to try to treat his problems. From 3-4 months, he started to show delays in gross motor skills, by now his gross motor skill is about 5-6 months old and other skills is about 8-9 months for 1 year old Jeremy.

    I was devastated when we found out what happened to Jeremy, and the doctors told me it could impact his movement and other aspect of his life. So far, he has problems controlling his muscle. We are advice d to do PT, OT, acupuncture, Chiropractor, followed up by doctors and neurologists... It is a very overwhelming experience. I also asked God the same questions: " lord, I have been faithful, why me".

    I learnt to accept his condition through this process, in the end only God knows how he will be and only HE can heal through miracles or other peoples hands, and our love and support to my baby.

    It was very tough and now I thank God he is improving, we don't know when he will be able to roll over, sit, crawl, stand or even walking, but I also trust God that HE has a plan for all of us.

    God also used Jeremiah 29:11 to encourage me time and time again. Actually HE gave me the name Jeremy and this verse while I was carrying him, I think God probably knew what was going to happen and HE has assured me Jeremy will be fine.

    Like yourself, I could never have imagined life would turned out like this before I gave birth. But nevertheless, if this is the path God has chosen for us, we will carry one with love, joy and sheer determination to finish the job and to glorify him. Each day is a tough day, as we are still doing on going treatment for him everyday, perhaps we would meet up at church on Sunday.

    I'm also planning maybe to join Mom's group if time allows.

    Thanks for sharing, you are so brave.