How bad can a birthmark be.....?


Very bad!
Ethan before going into hospital




Especially for our youngest child Ethan, his hemangioma birthmark almost killed him.

At 3 months old Ethan was diagnosed with a subglottic haemangioma, which basically means that as well as the birthmarks on his face, he had birthmarks growing in his windpipe, who'd have thought birthmarks could grow inside??!!

Ethan appeared fine when he was born, but over the first 3 months of his life, his facial birthmarks soon went from a rash like appearance to large red, sore welts which bled if touched. After admission to our local hospital for breathing problems, he was quickly transferred to the Evalina Children's Hospital in London, this is when we knew things were bad.

Within a week of being admitted to the Evalina, Ethan was moved to the High Dependency Ward (HDW), the next step before ICU. The day after being moved to HDW, Ethan went into surgery for the first time.

This was quiet possibly the worst day of my life, seeing my little baby dressed in a hospital gown (I never realised they made them so small) and having to sign the paper work that allows the surgeons to operate, but also acknowledged that Ethan may not wake up from surgery was almost to much. I wanted to pick up my baby and run from the hospital as fast as I could and protect him from what was to follow, but I knew he had to go to surgery, so with Spencer at my side, I  held Ethan's hand as he was put under the anaesthetic and said goodbye, fully expecting never to see him again.

Ethan after his first surgery
 I cant remember what we did whilst Ethan was in surgery, but eventually we got the call to go to the ICU, where we could see Ethan. Nothing prepares you for ICU, let alone seeing your 3 month old baby in a cot with numerous machines hooked up to him all keeping him alive. When I first saw him, I almost collapsed, if not for Spencer to hold me up, I would have. All patients have their own dedicated nurse to keep an eye on them, Ethan's nurse was lovely and very reassuring, she told us Ethan was unlikely to wake up properly that day and we were best off going home to be with his twin brother Ahren. Never have I been so torn, wanting to stay with Ethan or going to see Ahren and trying to pretend that everything was ok. Before we left we were told that he had birthmarks growing in his windpipe, which had been reduced in size to just 1mm.

The doctors explained Ethan may need a tracheostomy to help him breathe, (this is actually quite common treatment for children with Ethan's type of birthmark, and sound much scarier than it actually is) which was for now been done by a ventilator, as he was unable to breath on his own, other things were said, but at the time shock took over and most things went over our heads.

Before this gets too upsetting, I should just say that Ethan is now a 21 month old toddler, he is loud and naughty, funny and cute, adorable and smart. Although he still has birthmarks and scares me every time he has a cold, he is without a doubt an amazing child!


Ethan's on the mend, his first real smile was hospital!!
 Ethan was started on a drug called propranalol, not typically used in the treatment of birthmarks, but which had almost instant results. Over the next few weeks, Ethan went back into surgery several times, until eventually we were told he was well enough to go back to the general ward. This was an amazing moment and one at which we could start to hope he would be coming home with us. Eventually, after a few weeks Ethan was allowed home with a cocktail of drugs and follow up appointments.

So far everything seems ok, we still get scared when he has a cold, or doesn't seem quiet himself. His birthmark flares up at times, this worries us most, we can see the external birthmark but not the internal one, although logic tells us its ok, nothing totally eradicates the fear of what could happen.

If you have a child with a birthmark which is causing you concern, ask your health professional for advice, whilst Ethan's case is rare, it does happen and I'm sure you would rather be safe than sorry.

If you don't have a child with a facial birthmark like Ethan, but see kids that do, please don't stare, point, tell the parents to get the child laser surgery or make nasty comments. Whilst the child maybe to young to understand, the parents wont be, and trust me, we have enough to be dealing with without insensitive comments, which maybe innocent on your behalf, but to us can be 10th time today someone has said something about our precious baby. Personally, I don't mind people asking questions about Ethan's birthmark, we may have been through hell and back, but if we are able to help anyone else through their experiences of hemangioma (strawberry birthmarks) than that can only be a good thing.

Ethan and Ahren, both doing well!
Ethan has been on propranalol for over a year now, and it's been amazing, he is due to go back to see his consultant in the next few months, hopefully this will give him the all clear and we can all breath a huge sigh of relief. He may or may not need plastic surgery, his bottom lip is almost totally made up of scar tissue, he maybe slightly behind his peers in development but for now this is something we don't have to worry about.  
If you would like to ask any questions or just want to talk about birthmarks, please feel free to email me at amandamasters@hotmail.co.uk Spencer and I are more than happy, to answer any questions you may have

If you want further information on birthmarks go to: 

Comments

  1. Bless his little heart. Thanks for visiting my blog!

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  2. your boys r so cute, ok so now we have 2 things in commen, my older sis was born with a strawberry under her eye and under the skin she is 36 now and fine. people would ask my mum if she hit her and all sorts of stuff.

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  3. Both are absolutely adorable and a precious gift from God. I pray that Ethan will have no more stresses on his sweet little body. He is blessed to have such a loving mommy and daddy who are brave and are boldly share this journey with others.

    Thank you for sharing this story b/c I would have never know about this if not for you. I was touched by your tender plea for people to be compassionate towards children with birthmarks, it's a same we need to be reminded.

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  4. Oh, the poor little guy! I'm relieved to read that he's doing well. From your last photo, I never would have suspected that there had been anything wrong.

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  5. You cannot judge a tree by its bark.

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  6. Your babies are beautiful. I'm so glad he is doing well.

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  7. After your comment on my blog I had to come over and see your sweet NG rockin' boy. Oh, my, he is GORGEOUS. And yes, he wins the NG Boys Team Award! Someday hopefully he and my daughter can get together and be amazing, those fabulous NG babies!

    By the way, I'm IN LOVE with your blog and creative ideas. I'm your newest follower. ;-)

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  8. Thank you for sharing your story - what an unbelievable time you went/are going through. I remember when they put my 1 yr old under I lost it. I'm so glad things appear to be improving - your boys are beautiful
    Jennifer
    www.bigdandme.com

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  9. I had NO idea that birth marks could grow inside bodies! That is so scary and I am glad he is doing well and thriving! He is a doll.

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  10. i have tears in my eyes. I cannot imagine what you all went through and it is amazing how well you are doing. Bless you and wish you all the best!

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  11. Wow! This is an amazing story!! GOD is good!! :)

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  12. Thank you for sharing your touching story! Both of your children are absolutely beautiful and perfect!! I am so happy that he is doing well now. We appreciate you linking up with us this week. We hope to see you and your inspiration again soon.
    Britney
    www.jandmseyecandy.blogspot.com

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  13. I know I'm a little late on this but this post popped up in the posts you might like while reading your jar tea light post. I was born with a mole on my leg they called a birth mark. I took a lot of teasing when I was a kid. So much so I was afraid to wear shorts. I wouldn't even go out for sports. When I had it removed in my 20's I was constantly paranoid that I kept having to look down and remind myself it was no longer there. It becomes so much a part of you. Like your arm or leg.

    I have to say (and I'm not just being sweet) you have the cutest boys. Even with the marks your son so adorable. If people can't look past the marks, they are the ones with the bigger problems.

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