Musings of a Marfan Mom

It’s Twins

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During the next couple of weeks I’ll be featuring a few guest posts, as I get moved into our new home. Today’s guest post is by my good friend Samantha. She is mother to twins with Marfan syndrome: Kylah and Klaire.

It’s twins… Seriously? Smile.

I was so excited I’m about to be a twin mom, I plan all these things, than I find out it’s girls. (Although I secretly wanted a boy, who am I kidding everyone knew I wanted a boy.)

I had so many plans for “MY GIRLS”, being bi-racial I got excited for their hair, couldn’t wait for the curls, all the pretty clothes, all the styles.

Stock piles of diapers and bottles, stock piles of everything.

26 week ultrasound, something all mothers dread to hear, We found something with Twin B and we want to look further, OK so Hydrocephalus, Meh it could be worse was what I thought, True right.

28 week ultrasound, Twin A has leaky mitral valves, Ok so. A heart defect and hydrocephalus. Still could be worse. The rest of my pregnancy was fine, 36 weeks in, my ladies were ready for their grand entrance, and I was so excited.

Born 21 minutes apart, Klaire and Kylah are here, I see them for 5 mins; off they go to the NICU.

Scary, I want my babies, I can’t go. 3 hours later, I have doctors coming to ask me questions, I’m overwhelmed and don’t get it. What’s wrong with my babies? As much as I was prepared for the heart defect and Hydro, truthfully I really wasn’t.

Hours after being born, they had echos, eye exams, genetics, oxygen and feeding tubes. Wow something no new mom should have to encounter.

Day 2, I have a cardiologist telling me my twins have Marfan syndrome…They have what? All I think was my dreams are shattered, that’s right my dreams. It’s not my dreams, they have the long road to travel. I’m just the one standing beside them every step of the way.

All these doctors are explaining what’s going on, dislocated lenses, mitral valve prolapse, mitral valve regurge, scoliosis, and long fingers and feet, I had no idea what half of this was. I just knew every time I looked at them I fell in love more.

Week one, surgery number one, lenses removed in both girls. Dislocated lenses, glaucoma and cataracts, I can deal with that.

I bring them home, not really knowing what was ahead of me, and I was just ready to take it head on.

I began to research and learn, met some of my closet friends, had support, had help. Now I know I’m ready to take it on.

Marfan syndrome has been anything but easy. I wish I could wake up one day, and for just 1 day Marfan syndrome would not be mentioned, that won’t happen, Marfans made my ladies who they are. That I’m thankful for.

Being a mom of special needs kids has taught me a lot of things. I always planned the “normal” baby thing, I don’t know normal anymore, but I know what my normal is and that I enjoy.

This has been the hardest and bumpiest ride of my life. From ventilators, gtube, bipaps, meds, x-rays, appointment after appointment, week after week in the hospital, ICU to home back to ICU, I wouldn’t change a single thing about them, except I give anything to see Bear’s face, change her diaper one more time, cuddle her one more time.

I don’t hate anything, but Marfan I hate, and I lost my Klaire Bear with complications due to Marfans, something NO mother should have to deal with. But thankfully, she lives through her sister.

So from here on, I don’t plan, I just thank God for my everyday with my Kylah.

And the fact that she is growing so well, tall of course, but found a positive her height, for now anyway, we get to shop more often :-).

She may be delayed her in progress, or she may not do the things babies her age do, I couldn’t care less, as long as I see her smiling face, we will deal with our bumps and obstacles. But she will get there, just because she has the biggest team cheering her on.

We have the best of the best contacts, became close friends with wonderful people, have the best possible care, that part makes me smile.

Thank you so much Maya, for letting me write this, I feel honored to be writing for Musings of a Marfan Mom.

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9 Comments

  1. So moved with your positivity, Samantha!
    All the best for your little girl!

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  2. Great reading your story, great being your friend.

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  3. Wonderful Sam. You are so amazing in spite of it all you still stay positive. That takes a lot of strength and courage. It’s a privilege to call you friend. Hugs

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  4. I’m so proud of you; I knew you could do this share their story and show what you’ve been through. You are doing so great and you don’t know how truly blessed Kylah is to have you; I love you and Kylah so much and im proud to be their Auntie :)

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  5. Samantha,you are the strongest person I know ,to have endured what you have,and still see the light and stay positive!! Much Love and thoughts to you and your Family…kisses for Kylah!! and heaven sent kisses for Klaire xxxxxxxooo <3

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  6. Samantha – your incredible story breaks my heart and yet leaves me smiling thinking of your Kylah. We lost our twin grandbaby girls at 20 weeks almost a year ago – what we wouldnt give for a cuddle too. You are remarkable – stay strong.

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  7. Hi Samantha,

    I send my condolences to you and your family on the loss of your daughter precious daughter Klaire. I have Marfans Syndrome and had a twin sister Amy, also a Marfan. She passed away in 1996 at the age of 38. I’m so sorry that Kylah has lost her twin. Even though we’ve never met, I’d send you a hug of comfort.

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  8. Hi Samantha,

    Sorry for loss for your daughter Klaire.My boyfriend has Marfans Syndrome and when I became pregnant with our daughter the DR told me that the baby had a 50% chance of being born with Marfans(she has had a bunch of tests done and so far has a clean bill of health but they told me at genetics she will have to keep being tested every couple of years).There are limits of what my boyfriend can do but he does not let it run his life.You are a very strong woman and no woman should have to go through the lost of a child.My bf and I also lost a baby through m/c at 91/2 weeks before having Kennedy and I also had a m/c before meeting my bf.Sending hugs to you and your family.

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  9. Hey ! I just read your story and its so warm and touching, Kylah is so blessed to have you as her mommy, and she knows where her baby sister is right now, Kylah will always have her little sister with her all the time!
    I will always think of you and baby Kylah!
    Take care

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