Thursday, November 19, 2009

how an introduction changed my life

There are moments in our lives that change us forever. Sometimes they are small, sometimes they are large. You may or may not know your world is changing, but however it happens we are changed.


Mama Kat (by way of Leslee) asked us to "Describe in 1000 words or less a time when something happened and you knew that life would never be the same."

My moment occurred by way of an introduction. I was laying in my hospital bed when a man walked in and introduced himself.

"Hello. My name is Dr. Ohlmstede, I am a pediatric cardiologist."

My first thoughts were along the lines of "oh, shit!"
I knew in that moment my world was changed forever.

I was alone at the hospital, the day after giving birth to our youngest son. My husband had gone out to get lunch, and I was enjoying a nap. The pediatrician on call had told me earlier in the day, that she heard a heart murmur on our son, but that it was probably the normal DA closing off and not to worry. Amazingly enough I didn't worry. Until I saw the "pediatric cardiologist."


"A pediatric cardiologist" are words no mother should ever have to hear.

I immediately knew something was really wrong with our son. I knew that this wasn't going to be good and I fought back tears and emotion so I could hear what he was saying. Amazingly, he was the gentlest doctor I'd ever met. He knew that he was delivering a crushing blow to me and he wanted to do it as gently as possible.

He sat down next to the bed and explained that after hearing the murmur, the pediatrician had ordered a echo-cardiogram to make sure it was nothing out of normal. The echo showed that my son indeed had a heart murmur, due to a heart defect called Ebstein's Anomaly.

At that point I started to crumble. I wanted my husband there to go through this moment with me, but I was all alone. I wanted to order the doctor out of our room, so that maybe I could wake up from this bad dream. Unfortunately, I can't make up words like Ebstein's Anomaly in my dreams, and I knew I had to concentrate on what the doctor was saying.

He went on to tell me that birth defects are really common, that they occur in 1 out of every 100 births, and that I didn't do anything wrong.

The waves of shock just kept coming. How could I not know about the possibility of a heart defect. I knew of down's syndrome, and spina bifida, but none of those occur even remotely as often as 1 out of 100. How come my ob never told me?

He kept talking, and I was trying to keep up. Thankfully he was patient with me.

He went on and explained that of all the heart defects, our son had one of the most rare. Ebstein's occurs 1 out of 30,000 and no one knows why.

I should really start playing the lottery.

He wanted to draw a picture of the heart and explain to me what was going on, but didn't have any paper. I gave him the back of my breastfeeding instructions. He explained that Ebstein's Anomaly occurs when the tricuspid valve doesn't close properly. This allows blood to leak back through the valve, and may cause the right atrium to be enlarged. In effect, not enough blood was getting oxygenized before going back into the body.

I wanted more details, I wanted a bigger picture. What did this mean? Would my son have to have heart surgery? Will he .......

Dr. Ohlmstede immediately started to calm the fears that came across my face. My son was not in immediate danger. We would have follow up appointments, and more tests run before anything was done. We would learn what to look for and how to take care of him. He also told me to be careful of what I read on the internet. That their pictures are usually worst case scenario and we didn't have the worst case.

Thank God.

He told me we would have an appointment to come into his office after we were discharged and he would do more tests and show us pictures of our son's heart.

I was grateful for this doctor and how calm he was.

He thanked me for letting him talk to me. He said he knew I would have more questions after I processed everything and that he would come back the next day and talk to my husband and I together. He would go through every question we had. And then he left.

And I crumbled. Life would never be the same.

45 comments:

  1. It is a gift to get a doctor who is patient and kind and caring when going through something difficult like hearing something is wrong with your child. I'm glad you had a doctor like that and I wish your husband could've been there with you. Thank you for sharing.

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  2. You told this so well. I could feel my stomach tightening up as I read it. I am sorry you had to go through that.

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  3. Thank you for sharing your story.

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  4. What a profound and wonderfully written post. You made this momma actually feel that sinking heart right along with you. Thank God for good Dr's

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  5. I can't help but wonder what it has been like since those words and how he has come through it all. I can't imagine having to hear those words without your husband by your side, even though he was a good doctor.

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  6. My stomach ached while reading this...thank goodness he was such a nice Dr!

    Came by way of Desert Rose Moments

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  7. This gave me chills. Very powerful. Thank you for sharing...I stopped by because I saw you on Mama Kat's McLinky.

    I'm a new follower. I love honest, heartfelt things like this..very well written.

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  8. What an honest story. When your baby is born, you just want everything to be perfect, and to see that specialist come in... But to learn his bedside manner was so calm must have meant the world.

    Great blog, by the way. So far, we're a house with one girl, but man... 3 boys! I can;t wait to read more of your stories :)

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  9. You did a great job telling that story. What a difficult time that had to be for all of you. I'm so glad his doctor had a good bedside manner. I know that eased the blow a little bit. Are you going to do a follow-up post on your son's journey with this? I'm sure we would all love to read it.

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  10. Thank you for sharing that! So scary! And even more so because you didn't have your husband there for support.

    Three of my children have had heart problems (2 benign murmurs and an irregular beat) so we've had to see the dreaded pediatric cardiologist too.

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  11. Good lord. I'm on the edge of my seat here. Wow. So grateful he was everything that my neuro wasn't.

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  12. Wow, what a beautifully written post. My twin pregnancy was a nightmare (I had TTTS), and I remember very well that sinking feeling and utter lack of control upon diagnosis. Not quite the same, but this post definitely triggered that memory in me.

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  13. Aw...every mom's fear, huh? Hope all is well now.

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  14. I have a heart murmer too. It was discovered when I was very young so I don't remember much about it. I was just told I shouldn't participate on any school sports teams that had intense practices. It never seemed to bother me but even now when I have my yearly checkups, the doctor always thinks they made a big discovery. I am now 56 and just played some football in the snow with my Sunday School class boys yesterday. Just thought you may be encouraged to know this. It may be a different type, I'm just sharing my experience with you of how it's been for me.

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  15. That is definitely not something any mother should have to go through. Sounds like the perfect doctor though - sometimes that's what makes all the difference in the world. ((HUGZ!!))

    Happy SITS Day!

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  16. How unbelievably scary. And how heartbreaking to be alone when he came in. It's wonderful, however, that you had a compassionate doctor to explain and give good advice.

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  17. 1 out of 100? Shocking. Thanks for sharing your story with us.

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  18. This post is beautifully written.

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  19. I can not imagine facing that news alone on the downswing of the emotions you have after birth. How scary! My heart breaks for you, that is a life changing moment. Nothing is harder than hearing our kids are hurt.

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  20. Wow. Thank goodness for good DRs, there are some out there!

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  21. I wish all Drs were like that nowadays....

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  22. That had to be so difficult. I remember my moment with a doctor that changed my life forever...they are so difficult...

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  23. Wow, no Mother should have to deal with that. Although my son had a murmur but thank goodness it was nothing to worry about. But the worry recently came back and he is now 23. My nephew who is 26 was told he had Cardiomyopathy, heart issues that run my family and he also had a murmur as a child... Bless you and your family.

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  24. Wow. That would be so difficult to hear, especially by yourself. Good doctors are such a blessing.

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  25. That sounds so scary, but I agree that your doctor sounds amazing. Explaining everything in detail and even drawing a picture to help you wrap your mind around it. I hope your little one is doing well.

    Happy Sits day!

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  26. My stepson has congenital heart defect. He was born without a aortic valve. He is terminal but after 16 surgeries he is still here. Just have faith. It is amazing what they can do today. Cleveland Clinic has been a God send. By the way James (my stepson) is going to be 15 this year. Don't worry mama. :)

    Christine

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  27. May God Bless you all! Thank you for sharing your story.

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  28. You brought tears to my eyes! I pray that all is okay for you and your sweet son!

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  29. Thank you for sharing this with us. I hope things are going well with your son.

    Leslie

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  30. I knew when SITS put Congenital Heart Defect Awareness there had to be more information this on your blog. Where should I read next? How is your son doing? I remember reading Cora's story on Heather's blog.

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  31. Wow. So, how is your son doing, what's the course of treatment/managing his defect? Hope things are going well for you all.

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  32. Wow! Life changing indeed. Thanks for pointing us to a great post.

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  33. Well jaysuschristo. That made me cry. I'm glad your son is doing well now. And thank god for competent, kind doctors.

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  34. Fabulous post. Breaking bad news is the hardest thing doctors have to do, and it sounds like that paed did a good job in a dreadful situation. Hard as it is to break the news, it is so much harder to be on the receiving end. I hope that he is doing well :)

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  35. This made me tear up like a few others commented. It's amazing that the doctor was as patient and gentle as he was, doesn't make the situation easier but it makes the news a little easier to absorb.

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  36. Thanks for sharing. I felt like I was right there in the room with you! My hubby has a heart murmur too. I am glad that I know by your blog description that your little man is okay. Happy SITS Day!!

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  37. What a blessing to have had such a compassionate and caring doctor to see you through. We need more docs like this one! Blessings on your son and your family.

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  38. That is the kind of doctor everyone should have. Thanks so much for sharing your story with me! How is your son now? God bless and Happy SITSday to you...I saw you on SITS, congratulations for being the featured blogger of the day!

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  39. Blessings to all of you! I can't imagine what you must've felt like that day or in the days, I'm sure, that followed. We did have a cancer scare with our middle son, but thankfully it all turned out fine. I've been told that we, here in the US, take for granted what a true miracle it is when a baby is born healthy. I hope your little guy is doing well!

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  40. Stopping by from SITS. This story brought tears to my eyes. I can't wait to read more.

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  41. I can only imagine what it was like to hear those words and to be by yourself.

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  42. Oh, wow - I am a new mom and everything scares me... I am so sorry that you had to be alone hearing that. I hope that everything will get better with your little guy.

    Happy SITS Day, by the way!

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  43. What a beautifully written account - straight from the heart. I hope your son is doing alright now...

    I enjoy doing Mama Kat's Writers Workshops, too. Great post!

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  44. No mom want to hear that something is wrong with their child. I know the feeling. I had a scare when my 13 year old was around 2 months. Thanks for sharing your story.

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  45. My heart goes out to you!! It is the hardest thing in the world when something isn't quite right with our children and in my case grandchildren! (tears and a sigh)
    Sharon

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