Ella-May Lummis

Hi my name is Michelle Lummis. I have 4 beautiful girls, Ebony-Louise (15) Lucy-Mai (13) Annabelle (17mth) and Ella-May would be 12weeks.

It all started when I went for a routine growth scan. we were told Ella-May had an abnormal blood flow to her brain and her heart was very enlarged. We were then transferred to the princess Anne hospital, were they diagnosed VGOM. We were told it could only be treated in GOSH and that it was very serious and life threatening of left untreated, so we prepared ourselves for our trip to London and leaving life as we knew it behind. I was admitted to the EG ward and prepared for an emergency c-section a few days later.

On the 28th of October at 11.47am our beautiful brave baby girl was born. We didn’t get to see her straight away as she was taken away to be stabilised. I was recovering but managed a quick peak at how beautiful she was, as she was being baptised before her transfer to GOSH. She was doing so well and then her heart started to fail. They took her down for her 1st embolism on the 29th and I rushed over to be with her when she was brought back up to NICU. She looked well and our understanding is that surgery went well, but complicated. We are still unsure why.

As the hours ticked over she started to struggle more. Then the unthinkable happened. She had a massive bled on her brain and her out look was extremely slim. Ella-May was taken down to have a shunt fitted, but we were told she was unlikely to survive. She did and we stood by her side for the next few hours…

Ella-May took another turn for the worse, the shunt got blocked and her brain was so severely damaged, she wouldn’t wake up or live. We had to withdraw treatment. We’re so sad and loved her so much. R.I.P beautiful angel.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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7 Responses to Ella-May Lummis

  1. natalie says:

    so sorry for your loss vain of galen is such a horrible condition r.i.p ella may sleep tight x love natalie and kyle x

  2. Jade Gahan says:

    I am so sorry to hear this devastating news. I am in tears reading it. Even though I don’t know you, but I somehow feel connected with other parents and children children have the same illness. Stay strong hun from one mother to another xx you are in my heart xx rip beautiful angel xo

  3. lbeth1950 says:

    I’m so sorry for the loss of your beautiful flu baby,

  4. Jenny says:

    We too lost our little angel at 4 months, truth be told no matter what you did or didnt do you will feel guilty for, We are so angry at ourselves for the decisions we made, and when i read other parents posts and stories they are angry and guilty about their decisions they made, either we acted to quickly, or we played safe and waited, or went to a different doctor… the list of all our guilt just goes on and on. Please I know its hard, but you made the right decision with the information you were given at the time, I followed your story on the Vein of Galen FB page, and i remembered saying to my husband how lucky you were to be were you were with such good Drs and how lucky you were that she was being treated straight away. Our Drs made us wait and wait, it was just too terrible. We will always carry the guilt, we are parents that’s our jobs, but please you must remember, you did EVERYTHING you could at the time, and that’s all the matters. I honestly believe that as souls they choose their own time to go for whatever reason, we were just fortunate enough to be their parents. Sending so much love to you and your husband.

  5. arminta says:

    Hi michelle, my story is almost like your’s….my son adam who is now 8yrs old was born with the same exact
    thing….he also had congestive heart failure
    when he was born….my son to this day has had 9 brain surgeries and 3 hours of radiation just to try and keep his malformation under control…I know he didnt passaway like ur daughter did but believe me it has been a very hard and long road….my heart goes out to you and ur family….my son has some delays from all the surgeries….he cant read or write very well but he sure trys…and he has a hard time remembering stuff…so sorry to hear about ur daughter.

  6. Arminda says:

    Hi , I’m so sorry to hear about your loss . My son just passed away as well due to VGM . It’s a horrible thing to not be able to anything to help our baby’s but they are in a better place . I am trying to bring awareness to this in any way possible since it’s such a rare thing to have . God
    Bless

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