Our son Jackson was born at 5:32pm on 11/12/13 at the Montreal Jewish General Hopsital. He weighed 8.7lbs. After being stabilized at this hospital he was transported to the Montreal Children's Hospital to the NICU where he was to be stabilized once more.
Unfortunately, his lungs were not strong enough to be supported by ventilation alone. Given the option to let him go or to attempt additional life support, we decided to do whatever it takes to give him a chance & at 11:00pm he underwent procedure to be supported by VV ecmo.

Before I continue, I wanted to express how much of a shock this has all been. Even with all your support, and information and the months and months we've had to prepare, there is no way to prepare your heart for something like this. At 39 weeks we were told the size of our son and his LHR, which was 2.0at the time were indicative that he would likely do very well. I wish they had never said that because we went into labor with naive optimism after a hopeful but more realistic approach the entire pregnancy...

Anyway.
12/12/13 The day after he was born went quite well. His numbers were in an acceptable range for his condition and we were told the short term goal was to keep him stable for 3 days, at which point the doctors/surgeons plan to evaluate whether or not they think it will be beneficial for him to undergo surgery while on ecmo, or if it is preferential to wait. We got a call early on 13/12/13 saying that the cannula was causing his numbers to falter and needed to either be re-positioned or replaced all together. It was explained to us that there were many risks involved in doing this and that if they did have to replace it there was a significant risk he would not survive. Thankfully they were successful re-positioning the cannula (around 1230pm) and once again his numbers were to their liking.

We have been back and forth from the hospital; trying to balance our two girls at home and maintaining a presence with our son at the hospital. My husband is having a much harder time being close to him and oppositely I have to be "forced" to leave. I don't even feel like I gave birth less then 3 days ago. Everything about this is surreal.

At about 5pm yesterday we received a call saying that they found a small pool of blood in the back right hand side of his brain. It is to be monitored closely and hopefully is gets smaller and not the opposite. In the meantime, they planned to reduce the blood thinners.
I called to check up on him around 9pm last night and apparently his numbers were very good compared to the trends the past 2 days.
And that's where we are standing this morning- stable.

It's incredible to think that while this is all related to CDH we still have many obstacles to overcome before we have to think about making it through surgery and what recovery might be like. We are once again cautiously optimistic/hopeful and will try our best to follow the nurses advice and take things an hour at a time. Be prepared for ups and downs and to be scared often.

Xox I love you baby Jax.

As of our ultrasound last week, our visit frequency with that department was changed from semi-monthly to weekly. The reason for this at the time was that the technician noted an increased amount of amniotic fluid; and they decided that at 30 weeks it would be best to keep an eye on it. Simultaneously, they assured us that all findings were positive (including a lung head ratio of 1.8 and steady growth, with an approximate weight of 4lbs).
Today we went back for our first follow up scan and were told that the fluids had increased a significant amount and that a crescent shaped pocket of fluid could be seen in his chest. It was described as a small amount but along with the increased amniotic fluids the doctor seemed extremely concerned that this could be a sign of impending hydrops.
She explained to us that right now all we can do is monitor the fluids and "pray" that they do not accumulate too much more before the 36 week mark.

One thing I do not want to hear from my doctor is to pray. We do, everyday, but for her to have said this today after week after week of encouragement seemed wrong somehow.
She explained that right now his heart is nice and strong but that in these cases hydrops is often fatal. And that similarly to his diaphragmatic defect there is nothing we can do but wait.

Has anyone had a baby with hydrops preterm here with a positive outcome? We have been cautiously optimistic the passed few weeks and now it just seems like more odds are being stacked against little Jackson.

Waiting, as it turns out, has been the hardest part. We are well aware that this is just the tip of the iceberg but really hoped to continue to receive "good" news until delivery.

The risk of heart failure pre-delivery is just- I don't even know. We hoped to give our son a fighting chance- I pray he still gets that chance.

Since my original introductory post a lot has happened. Between numerous doctor and hospital visits, we have been riding an emotional rollercoaster: being elevated just to come screaming, speeding down to another bump or bend along the way.

Today we were taken for a pretty alarming turn.

We are currently at 28 weeks gestation and have officially entered our last trimester. What I've been describing as the honeymoon phase, where we were blindly optimistic, has come to an end, and with time nipping at our heels, our feet are now hitting the ground firmly as we try to stay ahead of and on top of things.

At first we felt we had received some really fantastic news.

Acknowledging, the fact the LHR is merely an indicator but not a guarantee of how well our son will do when he is born, as of Monday we jumped from a LHR of 1.06 to 1.6. This was very exciting and considered a huge improvement.
We also received our MRI results over the phone not too long ago (85% of his lung volume was recorded at 22 weeks), which put Jackson in the 'favorable outcome group' according to our surgeon. Yipee! And the amnio came back without any additional findings which was a relief as well.

Today, we had a check up with our obstetrician which was also positive. I gained 9lbs (which was a little bit more then I should have, but who's counting), our blood tests and glucose test came back okay, and overall everything seems to be progressing nicely. His heartbeat is strong and his growth and positioning are good too.
On our way out, our OBGYN provided us with a paper copy of the MRI (which we hadn't seen yet) and sent us on our way.

We left the hospital feeling like all things considered, things couldn't be any better, but when we got to the car things came crashing down.

I read over the MRI results as we began our drive back home and was shocked to read several findings in their impressions that were never mentioned to us.
First, we had been told that the stomach and bowels were herniated; when according to the MRI portions of the the left lobe of the liver are herniated as well. Having been explained that the more organs involved in the herniation, the worse the prognosis, this was upsetting off the bat.
Second, it noted the presence of "hypertelorism" at the occular level. I had to google what this meant because the MRI was written with 'fancy' medical terms, and we were alarmed to learn that this meant our sons eyes and pupils are farther apart then they should be. (The extent of this is not described- so we do not know how severe or mild this issue actually is).
And third, the MRI also describes a dilatation of renal collecting systems (which again I had to look up). From what I understand, this has something to do with blockage or kinks in the tubing that connects the kidneys to the urethra. It is noted that sonographic follow is advised for this issue and again no further details are listed.

Finding out about these additional issues by reading the MRI results on our own was devastating. How could all of the medical personnel we meet with have forgotten to tell us about the additional findings? We felt betrayed and now wonder to what extent we are really being informed about his conditions.
Needless to say, I have left a message with our pediatric surgeon to discuss what we've read and to hopefully get a better understanding of what extra obstacles our son will now have to overcome.

I think the worst part about this is that with less than 3 months until his arrival, we were finally getting a handle on our emotions and had moved past the initial shock phase of his diagnoses. These new findings basically put us back in the dark and has filled our heads and hearts with much more uncertainty and fear.
I feel like we've spent the passed 2 months preparing for and informing ourselves the best we can about CDH, which will surely be his biggest obstacle, but now we have about 3 months to add two more defects to the list.

When I heard id be a mother
Those 5 years ago
It all seemed like a dream
Until my tummy it did grow

I'd never held a baby
Or rocked a babe to sleep
But in my heart I knew from then
The promise i would keep.

I'd keep my baby warm
And soothe her when she'd cry
Id tell her everyday
she was my wish from in the sky.

When you become a parent
No one does tell you how
But for that love, that miracle
You take a silent vow;

To protect to teach and cherish
To hold close everyday
To try your best and put them first
In every single way.

This pregnancy is different
My third child on the way
I make that vow with every prayer
Hope hell be here to stay.

The doctors they have told me
There is no guarantee
That my son, he will come home
To sit upon my knee.

When he comes into the world
He will fight for his life
And in this I am helpless
Those words feel like a knife.

I can't tell him hell be ok
Or kiss away his fears
And when he can't take his first breath
Ill bathe beneath my tears.

I know the doctors are prepared
To do all that they can
But as a mother, I admit
I'd like to hold his hand.

And promise that ill be there
Let him know hell be alright
To my boy, I wish for you to
Do your best and fight.

I love you and i need you
If we survive the scary start
I will soothe you and protect
With my all my soul and all my heart.

Please be ok.

Hi there,
My name is Samantha. I am 28 years old and have two daughters; Leyla (age 5) and Ivy (19 months). We are currently expecting our son, Jackson, who was diagnosed with CDH at 21 weeks gestation. Our due date is December 16, 2013.
Admittedly, my spouse and I had no knowledge of CDH prior to being diagnosed. I am still trying to digest the reality of it all.
The past month has being filled with every emotion you can think of; notably fear, helplessness and denial, and having found this website along with some other resources has been more then helpful. It helps not feeling completely alone- which was an overwhelming feeling after that first ultrasound.
At the time, we had gone to the hospital where both of our daughters were delivered. It does not have an NICU or specialists onsite. At first, when we were told we were expecting a boy, neither of us could stop smiling. We hope to have 5 children one day and were due for a little man. But then, the atmosphere in the room changed completely and we knew something was wrong. The radiologist fell completely silent and asked us to come back in 15 minutes because she had to discuss something with a resident Dr. We walked around the hospital wondering what the technician could have seen, and when went back to be told in brief about the rare condition they both suspected. The Dr told us that in 15 years we were the 3rd case he had seen with CDH, and continued to tell us that although he wasn't a specialist, he could tell us that it was a big problem. He explained the function of the diaphragm and how misplaced organs compress the lungs. He explained that this could impede our sons ability to breath once he is born. We were devastated.
Between that ultrasound and the next there was about a week before we could see anyone. I spent hours upon hours reading about CDH. I'm a person who asks a lot of questions and feels reassurance in information and knowledge, so that was how I was initially coping with the bad news. My spouse basically buried his head in the sand.
When we finally got to go for our second opinion ultrasound at another hospital, a lot of the initial shock had worn off, we just wanted answers and hoped there was some kind of a mistake.
It was confirmed then by Dr.Shear that our son had a left sided CDH containing his stomach and bowel. His heart is pushed completely to the right. At the time his LHR was 0.87, which we'd been told was at the more severe end of the spectrum. The rest of his anatomy is normal & currently there is no sign of hydrops.
She explained to us that there is no guarantee that he will survive, but that there is hope he might: this is probably the biggest hurtle we are dealing with at the moment. How do you prepare yourself for both life and loss? Drs have told us to hope for the best but prepare for the worst which seems so dark. We know that's its very real but some days it feel so much easier to see the sun shining and keep your head in the clouds. To pretend that everything will be ok.
We have been meeting with genetics counsellors, pediatric cardiologists, pediatric surgeons and having tests done and are being monitored quite closely by our doctor. We've been told that the LHR is an indicator but is by no means a guarantee of life or death. So, really, until baby is born no one can really say "this is what's going to happen".
We've gotten some results (amniocentesis showed no chromosomal issues) ; fetal echogram showed his heart is well formed but very out of place- and we are waiting for results from our MRI where they will confirm lung volume and whether or not the liver has herniated as well (they could not confirm this by regular ultrasound.)
At our most recent hospital visit we met with one of 5 pediatric surgeons to discuss his diagnoses in greater detail and what to expect after giving birth. As it stood then, we were told along with ventilation there was a high probability that our son need ECMO given the current findings. We had a tour of the NICU and were told that if Jackson has the most severe form of pulmonary hypoplasia mortality may be higher than 80% regardless of interventions... This just about broke our hearts.
Today I am 23 weeks and 4 days into our pregnancy. Our last ultrasound, on the 19th of August, showed improvement in the lung tissue. His LHR was 1.06.
The doctors told us we have the option to terminate up to the end of our 24th week; but I know that whatever happens I could never forgive myself for not giving him a chance- so this is not an option. I feel him moving every day. I already love him as much as my other children & have imagined holding him in my arms.
I hope to share our journey with you and to find companionship and reassurance in your stories. Heaven knows this is the hardest problem we've had to face & with so many conflicting emotions its hard to make sense of it all.
Hoping for a miracle.
Sam