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SamanthaStein

An Introduction

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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

Comments

  1. Chris and TracyMeats's Avatar
    Hi Samantha, welcome to CHERUBS. You have found a wonderful support group and we are here for you. You are currently posting in the blog section of the software and many of our families do not visit them or should read them. If you post under the forum section, more of our members will read your post. Many of our expecting parents are posting here (starting a new thread). http://www.cdhboards.org/forumdispla...s#.Uhd_Z8rnY5g

    I am so sorry you are on this journey of a CDH with your son. My best advice is to find a hospital experienced in CDH and with ECMO resources. Your doctor mentioning the LHR and it being a marker for outcome is right on. Until your son is here and fighting, doctors cannot predict the outcome of your son. There are so many factors that doctors can't predict, such as pulmonary hypertension and how your son will handle the medical intervention.

    One day at a time and focus on the positive. This is the hardest journey you will be on. Never give up hope. Love your son to the moon and back and treasure the time with him....he is safe right now and growing. Tell him to keep fighting. He will feed off of your strength and fell your love.

    What questions do you have for us? It sounds like you have been doing all the necessary tests and making a plan. Let us know what you hear from the MRI.

    We are here for you, let us know if you ever need a friend to talk too. (((HUGS))). I am a mom to a CDH survivor son, who is now 9. I also have 3 other healthy sons. Let me know if you need help navigating the forums.
  2. SamanthaStein's Avatar
    Thank you for your kind and welcoming words. I actually ended up starting a blog because I was having trouble starting a thread in the forums, so I appreciate the link.

    You mentioned that you have 3 children aside from your CDH survivor. Do you have any advice in respect to preparing other children for what is to come? We've explained to our 5 year old that her brother has a booboo that is going to have to be fixed once he is born and that he might not come home right away: I'm not sure if shell understand if I explain he might not come home at all. How did you prepare your other children?
    I will update the blog after each appointment and if we get any news from MRI.
    Thank you for your reply

    Quote Originally Posted by Chris and TracyMeats
    Hi Samantha, welcome to CHERUBS. You have found a wonderful support group and we are here for you. You are currently posting in the blog section of the software and many of our families do not visit them or should read them. If you post under the forum section, more of our members will read your post. Many of our expecting parents are posting here (starting a new thread). http://www.cdhboards.org/forumdispla...s#.Uhd_Z8rnY5g

    I am so sorry you are on this journey of a CDH with your son. My best advice is to find a hospital experienced in CDH and with ECMO resources. Your doctor mentioning the LHR and it being a marker for outcome is right on. Until your son is here and fighting, doctors cannot predict the outcome of your son. There are so many factors that doctors can't predict, such as pulmonary hypertension and how your son will handle the medical intervention.

    One day at a time and focus on the positive. This is the hardest journey you will be on. Never give up hope. Love your son to the moon and back and treasure the time with him....he is safe right now and growing. Tell him to keep fighting. He will feed off of your strength and fell your love.

    What questions do you have for us? It sounds like you have been doing all the necessary tests and making a plan. Let us know what you hear from the MRI.

    We are here for you, let us know if you ever need a friend to talk too. (((HUGS))). I am a mom to a CDH survivor son, who is now 9. I also have 3 other healthy sons. Let me know if you need help navigating the forums.
    Updated 08-23-2013 at 01:02 PM by SamanthaStein
  3. Chris and TracyMeats's Avatar
    My CDH'er was my second child. At the time of Ian's arrival, we had no clue he was to be born with CDH. At 36 weeks, my water broke and we knew the baby was not handling labor, so they took him by C-section. At birth he was purple/blue in color and not breathing. They could hear bowel sounds in the chest and an xray confirmed the CDH. I had no preparing for what was to come and what CDH even was.

    My first son was only 19 months old at the time, so he didn't understand anything of what was happening. He knew the baby was out of my tummy, but didn't understand what happened. At his age we would show him pictures, but he really didn't grasp anything that was happening. They day we brought Ian home from the NICU was the first day he had met his baby brother. He didn't understand his parents splitting time at the NICU and home and why he had to be at grandma's for so long at a time. His personality changed over those few months and it was very difficult.

    I think you have to be honest with your children and try to best explain to them what is happening with the baby on the way and let them know the baby is sick and doctors are going to do their best to help save him and that he will be in the hospital for some time. (Use age appropriate language) I think you need to keep her involved with showing her pictures and letting her draw/color pictures for her brother. Your NICU may allow her to visit, which may make things easier too. You have to spend time with them and make sure they know they are loved and even though the new baby is taking a lot of time away from them that they are important too. My heart goes out to you. I am not sure there is ever a good time or way to prepare siblings with what is about to unfold in the months to come, especially when they are so innocent and so young.

    Each time you log-in to the forums, you can click on the forum tab and hit new posts, it will show all the new posts since you last logged in. If you ever want to start a new thread, hit the forum tab and all the topics will appear. Hit the topic that interests you and then click start a new thread or read through threads. Hope this helps.