Kai

[image]

We went in for our 18 week scan excited and hoping that we were about to be blessed with the little boy that we and our two year old daughter Leilani had prayed for - the first boy in our family for over 30 years. We were ecstatic when the sonographer confirmed that we were indeed expecting a little boy!  Within minutes though, we were told not to worry, but there was something wrong.  It was discovered that my little Kai had bilateral pleural effusions - fluid surrounding his heart and lungs, preventing the lungs from expanding and developing properly.

We were rapidly referred to King Edward Memorial Hospital and on my first visit there, I underwent amniocentesis for infection and genetic testing to try to determine the cause.  It took almost two weeks to find out whether it would be suggested that we terminate or not.  Thankfully, all of the tests came back clear, which meant that it was likely that the cause was Congenital Chylothorax, a leak in his lymphatic system.

After yet another ultrasound, the third of what ended up being 20-something ultrasounds, the professors discovered that the fluid was still getting worse, primarily on the left hand side.  They decided to perform a thoracentesis, draining the fluid from his chest using a needle through my abdomen, to see if this would correct the situation.  We were feeling really positive that this would be the solution and that our little ordeal would be over.

The next week, our ultrasound showed that the fluid had actually worsened on both sides and it also showed the presence of ascites – more fluid, this time in his abdomen.  Our little one had developed Hydrops Fetalis.  I was booked in to have a thoracoamniotic shunt placed in his chest which would consistently allow the fluid to drain from his pleural cavity into my amniotic fluid.  It was my idea of a living nightmare as a needle phobe - to have a shunt surgery while awake with just local anesthetics and sedatives.  It was a very difficult day - it turned out that they had to go in through my side during the surgery as my placenta was anterior.

We worried about the risk of miscarriage every time we pierced the wall of his little home but knew that we didn’t really have any other options.  The morning after my surgery we discovered that the shunt had somehow been displaced, which can happen, and it was uselessly floating around in there.  This was a very difficult week for my husband and I - we were very disappointed.

We were still constantly worrying about whether we would be able to bring our little boy home happy and healthy.  Do we get his nursery ready or just wait?  Do we choose a name?  Do we buy clothes and nappies and all of those things that "normal" parents do?

We were again booked in for another surgery, however on that day his fluid looked a little better, so the professors opted for another thoracentesis instead, thinking that perhaps the Chylothorax corrected itself.   Chylothorax normally does correct itself with fetal maturity, it's just a matter of when this happens.  This unfortunately just delayed the inevitable - the following ultrasound showed that the fluid had returned rapidly so I was booked in for a third time for surgery. 

The first shunt in this final surgery went in a little too far and was stuck in my little one's pleural cavity.  As you can imagine, using a long tube to put a little shunt through a pregnant woman’s stomach into a teeny tiny baby’s chest and still managing to position it correctly using only ultrasound to guide you is nothing short of incredible!  The second shunt was placed.  At our next ultrasound, we could tell for ourselves by now that although the fluid had dissipated somewhat and the ascites had gone, the shunt was again displaced.  It was crushing.

At this stage (around 26 weeks) we had all gone through so much that the doctors just said we will have to wait and see what happens naturally.  I was given steroid injections and told that as soon as the fluid gets worse or moves somewhere else again they will just have to deliver him.  I had weekly ultrasounds as I had been since my original scan, and for a couple of weeks it looked like all of the post surgery "gunk" had temporarily blocked the leak into his chest, effectively "buying" us a couple of weeks of growth and development for our little hero.  We just went back again and again to see how much worse the fluid had gotten.  During this time I developed polyhydramnios and they also found that I had gestational diabetes.  To be honest, after what we had already been through, this diagnosis felt like nothing more than an annoyance.

After a couple of weeks of worry, the surgery 'gunk' eventually went and the fluid accumulated again on the left hand side of his chest.  For some reason though it began to stabilize.  We just watched it weekly and waited to see if we had to deliver or not.  We met with Neonatologists to prepare us for what was ahead if our boy managed to survive - a lengthy NICU stay and lots of trouble with underdeveloped lungs, as well as dealing with the Chylothorax and the wayward shunt.  We were also warned that Kai still hadn't been cleared for Noonan syndrome and we possibly wouldn't be able to tell if did have it for quite some time.

None of us would have even remotely guessed in our wildest dreams that at 32 + 4 weeks, 14 weeks after his original diagnosis, it would be discovered that the fluid had completely gone!!  The Chylothorax had corrected itself, and my beautiful boy then had 5 and a half weeks to have "normal" lung development before he decided to be born almost unexpectedly on the day of our final ultrasound, at 37+4 in May 2009 weighing 5 lbs 15oz.  He never spent so much as a night in the NICU.

He is now a gorgeous, happy and healthy little man who shows very few outward signs of what he went through – only some small scars on his chest, belly and side.  He returned to hospital for surgery at 4 months old to have the wayward shunt removed.  He was such a little soldier - he took it all in his stride.

He is about to turn 1, and we are so very proud of him. We will have pediatric appointments for the next few years to check on the area where the shunt was but other than that, he appears completely, totally and utterly "normal"!

We are so very grateful to our family and friends for their support during the most difficult time of our lives.

We will spend the rest of our lives in awe of Prof. Jan Dickinson (our guardian angel!), Prof. John Newnham, A/Prof Craig Pennell and their incredible MFM team. Thank you for the joy and the tears, the amazing expertise, the love, caring and hope that you gave to us.  We will never forget a second of this journey.

We are so incredibly blessed that I still find it hard to believe.  I hope that Kai's story can show people that true miracles really do happen - he is proof.

< back to 37 weeks and over
Back to Top