Three little letters

Dear blogger friends,


In the last blog post I explained about the new blog title, but I also left you hanging, saying that I would later explain how our lives were taking a hilly turn... Firstly, i would like to begin this post with the ending of a new favourite author of mine...she ends a letter to her readers in much the same way in every book, and it seems appropriate for the highway/rollercoaster journey we are taking. So “…strap yourself in tight, and don’t forget to b r e a t h e…”


Well, to accurately describe our journey it all began just over two weeks ago...Monday the 28th of March, 2011... At 830am we were in the waiting room of our local SKG Radiology office, excited about our 18 week pregnancy scan and getting to see our second child.


The scan began much the same as the scan we had when pregnant with Lucas, with the exception that the sonographer wasn't as chatty as our previous one. Anyway, she took the usual measurements and we got to see the heartbeat, its two little feet and two little hands, a profile shot and many screens of the internal organs.


We first suspected that something wasn't quite right was when the sonographer kept returning to look at the same area, the upper chest cavity and heart. Our second clue was that the sonographer became very quiet!! And our third clue was that we were there for nearly 2 hours, for an appointment that usually takes no longer than an hour...


So after waiting all that time, the sonographer finally said we could go and handed us the CD of photos to take home. It was a few hours later that we had our fourth and final clue...Chris missed phone call from our doctor. The doctor left a message explaining that we needed to come in and see him at the end of the day. He also explained the reason why.


Our baby has been diagnosed with a birth defect called congenital diaphragmatic hernia, commonly referred to as CDH...(three little letters).

Now, unless you have been personally affected by CDH you have probably never heard of it. Although it is classified as a rare condition, it actually occurs in 1 in every 2500-5000 births (depending which website you take your stats from).

CDH affects the internal organs in the stomach cavity and the chest cavity. The diaphragm is a muscle that separates the chest cavity (heart & lungs) from the stomach cavity (stomach, liver, intestines etc). It also helps us breath. A hernia is a protrusion of  tissue or organ in a weak muscle. Therefore, CDH is when the diaphragm has a hernia (in our case its on the left hand side) that allows the stomach organs to move up into the chest cavity, thus restricting the growth of the lung, pushing the heart across, and can affect the other lung also.

In our case, we have been referred to a specialist at King Edward Memorial Hospital (KEMH) which provides the best antenatal, specialist care in Western Australia. We have met a few members of our "team" that consists of doctors, midwives, residents, surgeon, paediatrician etc. It is also at KEMH that we will continue to receive on-going antenatal care and where we will deliver our baby.

So, we have shared the negative news that we received, however, there are some positives as well. We have been told that at this stage (20 weeks) our baby is looking healthy, other than the presence of CDH. We are also one of 8 or 9 families who are expecting a child with CDH in WA, thus meaning we are on the same rollercoaster road, and will hopefully be able to meet with them at some stage. Also, our team of specialists is encouraging me to have a natural birth (yay), no c-section unless medically necessary (just like any other birth).

Our specialist was also very excited to learn that Lucas was a big baby (9pd 3oz) as a bigger baby generally has a better chance of survival and there is a fair chance this baby will be big also.

We have also found two website, one from the US and one from Aust that offer support for families who experience CDH. The Cherubs websites are fantastic sources of information and inspiration.

Now, our journey will take us down a difficult stretch of road, with new experiences and more times of uncertainty. I (Tamala) have decided to blog about those experiences as it will help us process and absorb the information and help us adjust to our "new" lives. You are welcome to come along this journey with us, and feel free to leave comments here, via email, via facebook, in person, or any other way possible. Also, please do not be offended if we were unable to tell you in person - there are many people to tell and only so many times that you repeat the diagnosis. Therefore, we thought our blog was the best modern method of informing all of you at the same time.

We will leave you with encouraging words from Psalm 139, that remind us that no child is an accident, that all children are a miracle made by God, and although they may not be perfect here on earth, they will become perfect on the new earth.

Psalm 139: 13-16 (NKJV) 

¹³ For You formed my inward parts;
         You covered me in my mother’s womb.
 ¹⁴ I will praise You, for I am fearfully and wonderfully made;^[b]
         Marvelous are Your works,
         And that my soul knows very well.
 ¹⁵ My frame was not hidden from You,
         When I was made in secret,
         And skillfully wrought in the lowest parts of the earth.
 ¹⁶ Your eyes saw my substance, being yet unformed.
         And in Your book they all were written,
         The days fashioned for me,
         When as yet there were none of them.

Profile - 18 weeks

Feet - 18 weeks

20 weeks pregnant