Most of you are aware of the main pregnancy blog I’ve been keeping since the end of the first trimester.  With the latest news of Ben’s congenital diaphragmatic hernia (CDH), I wanted to create a new blog exclusively for this issue for a few reasons:

  1. The main pregnancy blog is, and always has been, something I intend to use to create a custom book for Benjamin when he’s older.  I don’t want the scariness of what’s going on to affect that book or take away from all of the joy we’ve experienced throughout this pregnancy.
  2. In my experience throughout the last week, I’ve found a lot of hope and help in reading the blogs of others who have had children with CDH.  My hope is that this will be helpful for others just beginning this journey with their child/pregnancy, or at the very least, help them feel like they are not alone. 
  3. Once Benjamin is in the NICU, I’ll be updating this blog quite frequently in order to keep everyone updated and maintain a log for us to reference.  I don’t want to bombard the subscribers on the main blog with daily/almost daily updates.

Since this is the first post in a fresh blog, here is a little background about what is going on – in case you are just tuning in or are unaware of what has happened so far:

My husband and I have been married since December 10, 2005.  We waited until July 2007, when we bought a house, to try and start a family.  Having Polycystic Ovary Syndrome (PCOS), we knew it would be difficult to conceive, but we were ready whenever the time came.  It wasn’t until January 2009 that we conceived the first time, and after a brief moment of excitement, we found that we were miscarrying. 

In October 2010, we decided to move across the country.  Mostly on a whim, but our plan was to decrease financial stress, change the scenery, and be in a place where we would most want to raise a family.  So we moved to Virginia and joked that we’d be pregnant within three months.  Two days shy of that three-month “deadline,” we found out that we were expecting.

It took us a while to get really comfortable with the pregnancy.  We were so afraid of miscarrying again, but so hopeful but we would not.  We nervously waited for the ultrasound tech to tell us there was a heartbeat at 6 weeks and 1 day.  We just kept looking forward to the end of the first trimester as a sign that this was really happening…finally.  Then we counted down to the halfway point, 20 weeks.  After a scare of incompetent cervix led to being admitted for observation at 26 weeks, we eventually began looking forward to each week because it meant we were still pregnant.  We had “made it” to 27, 28, 29, 30 weeks.  Then we were in the single-digit weekly countdown, and soon, Benjamin would be in our arms. 

Throughout the pregnancy, we had a lot of ultrasounds.  My OB had a small machine in her office and would check for the baby at each appointment until I could feel him move.  But by that point, a pleural effusion (fluid in/around the lung) had been discovered, along with noticing that his heart had been pushed to the extreme left.  These two discoveries led to regular ultrasounds, and the situation was further compounded by finding that his abdominal growth was lagging substantially.

After many ultrasounds and three fetal echocardiograms, my doctor suggested that I go for an MRI so we could check for a mass or a diaphragmatic hernia.  We had a brief moment of hesitation because after so many ultrasounds and echocardiograms, our experience had been that more testing led to more worry and questions, but very few answers.  Still, we agreed to the MRI because maybe THIS would lead to an answer.  So it was scheduled for 10:30am on Friday, August 12, 2011.

After the MRI, I figured we wouldn’t hear back on the results until the following week.  I assumed that they’d find nothing unusual.  Even when the receptionist called to see if I had a minute to talk to Dr. S, I thought about saying, “Got any good news for me?” while waiting to be patched through to him.  But right then, something stopped me…and I don’t know what it was.  He told me that they do see a diaphragmatic hernia, and that he didn’t want us to wait for two weeks until our appointment to discuss this.  He asked if we could come in on Monday morning, and I said yes.  And everything else in the room and on my mind just…disappeared.

I’m surprised at how little I researched it at first, since I tend to go overboard with researching things.  I knew what a hernia was, and I knew what the diaphragm did, but I didn’t know what the two of them together meant for Ben.  For us.  I also didn’t know how serious (or minimal) the hernia was, nor was I aware of any organ involvement yet.  But from what I DID research that night, it was clear that he’d need surgery and would not be coming home from the hospital with us.  I knew that he would not be placed in my arms right away, I would not be able to breastfeed him for a while, and I knew that there was no way around all of this.

The fortunate (and unfortunate) part of working for a hospital is that, depending on their rules, you can look at your own chart.  The hospital I work for allows it.  So Saturday morning, I decided to pull up the report from the MRI.  It read:

“There is a large, right-sided diaphragmatic hernia with herniation of the liver, bowel [intestines], and gallbladder, resulting in hypoplasia of the right lung and a leftward shift of the heart.”

So the hernia is large.  It is right-sided (only happens in 10% of cases).  His gallbladder, intestines, and at least part of his liver have traveled through the hole and into his right chest cavity.  The overcrowding of his chest resulted in underdevelopment of his right lung and has been the reason, all along, that his heart has been leftward.  The fact that the hernia is large, right-sided, and has liver involvement are all things that make his condition just a little more serious that it already is.

It was an excruciating weekend.  We were sad, angry, scared, worried, hopeful, and shocked.  All I could think was, “I did everything right.  And this still happened.  We waited so long for him.  We were ready for him.  I had taken good care of the baby inside of me.  I didn’t smoke, I didn’t drink.  I think I forgot to take my prenatals three times.  I wasn’t even comfortable taking Tylenol until just recently.  But there are people doing the opposite of all of these things and THIS isn’t happening to their babies.  Why Benjamin?”

I read several websites, several times.  Some helpful, some not.  But I wanted to have a basic understanding of what was going on before the meeting on Monday with the genetic counselor, perinatologist, and neonatologist, as well as the pediatric surgeon on Wednesday. 

After these meetings, we deliberated for two days straight about whether we wanted to deliver him here, where we have a fantastic hospital, or if we had the ability and option to travel to Children’s Hospital of Philadelphia, where there is an even better one.  For SO MANY REASONS that I cannot begin to list (seriously, hardly anything else was discussed for two days), we decided on CHOP.  The main deciding factors included the fact that CHOP has a CDH team of specialists, has the best NICU in the country, and we have the support of family that lives in South Jersey.  The logic behind our decision, too, was that if we had delivered him at UVA and things did not go well, we would have been angry that we didn’t go to CHOP.  But if we go to CHOP – the best option available for his condition – and the worst happens, we won’t regret our decision because we gave him everything we possibly could. 

And so we are driving up to Philadelphia tomorrow, the day before a full day (8-5) of consults, tours of L&D and NICU, a 3D ultrasound, 3D MRI, and fetal echocardiogram. 

Here we go.