Baby Woolgar’s CDH Diagnosis

On August 20, we were finally ready to announce to our families that we were expecting our second child. After a rough year with a loss in early March, we had passed the “danger” zone.

The next exciting part was the anatomy ultrasound and finding out the gender!

On October 26, we went in expecting a normal appointment and hoping we would be able to surprise our daughter later that night with good news. Instead we were told to wait a moment as the doctor would like to speak to us.

”Congenital Diaphragmatic Hernia”

We had never heard of this before, what is it? Is it bad? It can be fixed, right? Is the baby okay?

If you haven’t heard of CDH, it is a rare (1 in 2500/3000) birth defect that is caused when the diaphragm muscles don’t close properly which leads to organs that would usually be below to herniate to the chest cavity which causes the lungs not to have the space to develop properly. In our case, it is on the left side, so the left lung is very underdeveloped and the organs are pushing the heart to the right side which in turn is causing the right lung to not have the space needed to develop as it should.

Baby Woolgar falls in the moderate category which means we are eligible for in-utero surgery to place a balloon to “inflate” the lungs and hopefully help with some growth. Baby will then require surgery at birth to close the hole and put the organs back where they are meant to be.

Due to the nature of the condition, we have been referred to Toronto where the Ontario Fetal Centre is. We are travelling there Friday November 10 to do more testing and consults with the specialists there who will be following the rest of our pregnancy. We will be travelling there for the initial surgery, and then, I will be staying there once the balloon is removed around 34 weeks as there is a high chance of premature labor after that point and we must deliver in Toronto to give Baby Woolgar the best chances of survival and the best care she can get.

All of this will be followed by a lengthy NICU stay which could last months. Sean will be coming back home to stay with Annabelle (and Bleu) while I stay in Toronto to advocate and care for Baby Woolgar.

We are grateful to receive support from our families while we go through these hard times.

We are fortunate enough in Canada that tests, appointments for further diagnosis, delivery and our NICU stay will be covered by insurance, and we are lucky that my insurance through work is able to help cover transportation and accommodations to appointments, but unfortunately it looks like we will frequently be going to Toronto and this fund will run out quickly. We are looking at applying for funding and any assistance we can get, and we appreciate any help we can get to make these next several months less stressful.

We are all stubborn in this family and we know Baby Woolgar will put up a fight!

If you wish to have more information on the diagnosis, the Ontario Fetal Centre’s website has been a great resource to help us understand.