Baby Leo’s Story

April 22nd, 2012 by charlotte

2 out of 3 of my babies have contracted NEC & my little boy didn’t survive. I had twin boys on Mon 16th Jan 2012 at 33 weeks I was in hospital 5 weeks prior to their birth all over Christmas because I had pre eclampsia. Leo was 3lb 10oz & Jake was 4lb 1/2oz they were taken straight to the neonatal unit where Jake needed help with his breathing but Leo even though he was smaller didn’t need help. Over the next week I was expressing my milk for them both & they were tolerating it well. Leo did drop his blood sugar levels every now & then but doctors said that’s quite normal for preemies. When the boys were 9 days old they were moved into hot cots & doing well on day 10 morning they were both moved into normal cots no wires or monitors but Leo dropped his blood sugars again. Then in the afternoon Leo started being sick he went through lots of baby grows & by the time I went back to see them in the evening he looked yellow & in pain & was still being sick I was so worried because 3 years before my daughter who came at 32 weeks contracted NEC & had a hole in her bowel but thankfully she had medicine that healed her bowel but she started off being I was petrified this is what was happening to Leo so i told his nurse & she said she would keep an eye out looking back now I will never no if I kicked up more of a fuss for him to be monitored closer or demand to see a doctor my baby would still be here now because in the middle of the night he got transferred back into an incubator feeds stopped & pumped full of medicine & by the morning he was on a ventilator because his tummy was so swallow it was squashing his lungs. When I saw him on that 11th day he didn’t look like Leo he was white double his size & barely even here. The doctors told us he had to be transferred to another hospital in case he needs an operation it took the transfer team 5 hours to stabilize him just to move him 3 meters to the travel incubator we had to say goodbye to him then because we didn’t no if he would make it the 3hour drive in the ambulance. Our son made it to the hospital & we traveled up leaving Jake in our local hospital & our 3year daughter at home with family. At 5 in the morning day 12 they told us they have to operate because he was deteriorating quickly & we had to sign a form to say we understand if he died on the table or they might open him up & his gut would be so damaged they couldn’t do anything to help him. 2 hours later we got taken into a room & told very clearly all of his gut was dead & there was nothing they could do my baby boy was going to die. We were in turmoil but we spent as much time with him as possible I got him dressed for the first time & had him christened in front of close family & when he was 12 days old at 5.45pm they turned his ventilation off my baby died in my arms. I still have his brother & sister to keep me going & I don’t no why it happened to my beautiful Leo who will always be in our hearts & is the brightest star In the sky love you Leo x x x x x x

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3 responses to “Baby Leo’s Story”

  1. charlotte says:

    I wanted to tell Leos story from my point if view but what I haven’t said is my fiance Leos amazing daddy was there every step of thr way going through the same pain & amelia & Jake are the reason why I get up in the morning but matt is the there to keep me up. Hold on to your loved ones they will help the most x x

  2. sam says:

    Dear Charlotte, Matt, Amelia & Jake,
    Your are so brave & your strength amazes me. We will never forget Leo. I only wish we knew why this had to happen. I count my blessings everyday that I have my 3 children with me. As you know Martha had NEC after being born at at just 26 wks, but we were lucky & surgery was able to save her, but I know that my story could have been a very different one. Lots of love Sam, Andrew, Harry, Martha & Evie XXxxx

  3. Leanne says:

    Dear Char, Matt, Amelia and Jake,
    I just wanted to say really that I love you all dearly and im crushed everyday with the thought of the pain you are all going through!! You are all so strong and I often wander how such a terrible thing could happen to the most amazing wanderfull people! I understand part of the pain you are going through and all I can tell you is that time will help. Im so very sad that i never got the chance to meet Leo, but I have no doubt that he was the most special gourgus little baby just as Jake and Amelia are. My thought are with you all, including Leo every single day!
    Love you, Leanne xxxxxx

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