SamanthaStein
An Introduction
by
, 08-23-2013 at 10:20 AM (6335 Views)
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
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