June 1st, 2016 by megan

This is my story on NEC and my baby Mikel Angelo

April 6, 2016 23 weeks pregnant I went into Mercy medical hospital because I started to spot bleed, they ran test and told me I had a urinary track infection and sent me home with antibiotics.. As the night went on I started to bleed more heavily so I went back to the hospital were they admitted me and ran test. Later that night I was told that everything was OK and sometimes pregnant woman bleed with no properable cause. So I went home, but something inside didn’t feel right..later on that night I went to work as normal, while at work I felt pain like labor pain I timed my contractions and they were 3 mins apart I knew this because of previous pregnancies. I knew in my heart something was wrong, with the pain almost unbearably I asked a coworker to drive me to the hospital.. There I was admitted and hooked up to heartbeat monitor, the doctors did more test and couldn’t figure out why I was bleeding.. And now having contractions.. April 8, 2016 my water broke while I was at the hospital, the nurses were so upset they knew I was only 24 weeks pregnant and chances of survival were slim. As I waited crying my eyes out my boyfriend came to my bedside and told me everything was going to be fine..I was so scared I didn’t know what to expect… The doctor came in several hours later and asked me if I choose to have him personaly remove my son from my belly to abort him.. I was shocked he asked me this..he told me that a 24 week old baby was just to tiny and surviving chances were very low..and he can possible have mental problems. I told the doctor I wanted to save my son and I believed in him..so the doctor told me that he would call another hospital who specialized in preemies to have me transferred out..I agreed!! Later that morning a team of paramedics came and transfered me to st. agnus! My boyfriend followed, and arrived minutes later I felt safe there. A team of specialist came in my room and told me they wanted to keep me pregnant as long as possible and they were going to do whatever it takes to keep my son in my stomach.. They also wanted to find out why I was bleeding so much..they did a number of test and ultersonds and they finally figured it out!! My plecenta was detracting itself from my utrine wall and that it was pretty serious..if my sons lifeline gets cut off that can mean still born for him. They monitored me for 6 whole days until it was time. He was ready to come out.. I was rushed for emergency c-section and put under.!!! April 13, 2016 my son was born at 1 pound and 10 ounces and was doing well !! I couldn’t believe he made it through all of this… I was overwhelmed but couldn’t see him until I was stable and was wheeled down to the nicu … When I looked in the incubator I started to cry… He was so tiny but he was such a fighter I could tell right away he was going to get through this no dought!! 3 days later st. Agnus told me they had to transfer him to children’s hospital were he would be better off there with a team of specialist who deal with preemies and who have a excellent name…at the time I was nervous but I had no choice.. He was transferred and I was discharged.. Mikels new home was the nicu in Vallys children hospital.. He was doing so well that the doctors where applauding his excellents.. We were so proud of our baby..test results were always normal I was pumping milk for him.. Everything was looking good for Mikel until his feeds kept going up more than I can pump and milk supply was running out.. I was very upset…but having 2 kids an hour away and working an hour away from Mikel was so much stress on myself that I had to choose to put him on donor breast milk.. I disappointed myself and Mikel..but the nursers informed me that donor breast milk was so much better and it would help mikel.. So I consent to donor breast milk..he was doing well on donor milk and tolerating his feeds well.. He had good pee/ poop diapers and everything was perfect…until the hospital ran out of breast donor milk and put Mikel on formula at 29 weeks (gestional) I was NEVER INFORMED OF THIS!!! Later on me and my boyfriend(babys dad) went to go see Mikel after long day at work we arrived around 11pm may 22 2016 and Mikel didn’t seem his self he seemed to be in pain! I asked the nurse working that shift and he told me it was normal for him to have a little upset tummy.. And that’s when I looked at the feeding Mikel was hooked up to and asked him what was my baby being fed..and he looked at me and told me that the donor breast milk bank ran out of donor milk and they gave Mikel formula !! I was shocked and asked why?? He said well what else where they suppose to feed him!! I thought to myself that is weird and I ended up trusting them. as we held Mikel he cried in pain and discomfort I kept telling the nurse and he promised me that Mikel was fine I could tell my baby was in pain and he was trying to poop but he just couldn’t we were trying to help Mikel by putting his legs up and rubing his belly hoping we can ease the discomfort he was having but nothing seemed to make him feel better we gave baby mikel back to the nurse so he can but him to bed. He placed Mikel on his belly and told us that it would help him if he got placed on his belly So we kissed him and said goodnite..That early morning they called me and told me that Mikel became very ill and that I should come to the hospital right away! I started crying right away and asked the doctor how did Mikel become sick? He told me Mikel developed NEC over night! I thought to my self how can this be ? He was perfectly fine! I don’t understand! The doctor told me to come down to the hospital so he can show me pictures and explain.. So I arrived mins later..they took me in a private room and sat me down. They told me my baby became very sick and he had a very slim chance of surviving! I couldn’t believe what he was telling me I didn’t want to believe this nightmare I jus wanted to wake up… The doctor told me Mikel has a very serve case of NEC and his belly was so swollen and it kept getting bigger !! Everything was happing so fast I didn’t have a chance to digest everything.. I wanted to see my son fast…as I approached his bed I looked at him and his belly was so big and he was hooked up to oxygen..which he never required!! And he was being poked every where with 7 different nurses surrounding him.. I just couldn’t understand my son was doing so well and no problems at all weighing 2pounds 10 ounces he figured this preemie thing out… I was so overwhelmed with everything I couldn’t stay in the room any longer I left and called my family.. They rushed down to the hospital to see Mikel..every body was shocked as well we needed to know how he caught this NEC … After they left I was told by the doctors that surgery couldn’t be perform at this time it was basically to late and he was dying I couldn’t jus let my son die.. The doctors kept asking us if we wanting them to keep resesitating him..because he was going to become brain damaged if he kept being resitated finally Mikel played to rest on may 23, 2016 that morning I felt a piece of my soul being took from me. My angel who fought all his might to live just died!! I never got to understand why did they give my son formula without my knowledge… Was this negligence? I need to know ? This doctors that me and my boyfriend had to deal with had no type of remorse what so ever.. I just want Mikels story to be herd he impacted a lot of people hear on earth..now I feel I need justice for him…something wasn’t right about all of this…I have received his medical report and it clearly says ” baby was switch from donor human milk to formula which caused NEC which caused death ” Please I’m at a lost for words..is there others out there going through or went through this and if so please share thank u…

5 responses to “01-06-16(13:07:19)”

  1. Veronica says:

    Your story sounds exactly like mine.My daughter was born at 29 weeks and although she was really underdeveloped she was getting soooo much better while she was in the NICU. She was on breastmilk the entire time but at one point she was eating more than I could pump. The same day that the nurses ran out of my frozen breastmilk , things took a turn for the worst. I thought they would tell me if my supply was low or if they were going to change what they were feeding her but they didn’t. One day I came in and I was so impressed with her improvements. The next day they started her on formula. I didn’t know this until later on in the day. I was pretty upset when I found out because I wanted her on strictly breastmilk. Around 10pm things got really bad. My sister and mother were visiting her at that time and they called and told me to come to the hospital. By the time I got there she looked like a completely different baby. It was heartbreaking. She passed away 8 hours later and I can’t help but blame myself for not pumping enough milk. It’s been 3 weeks since it happened and I am still beyond devastated. I don’t know what to do with myself now. She was my first born child and I planned out my life as being a mom. .but all that has changed. I just wish that since the doctors know he risk of feeding formula to premature babies they would have communicated this to me before giving it to her.

  2. colette says:

    I can completely understand your pain! I cant believe doctors know the chance of preemies getting NEC and still tube feed them forumla! I lost my twin daughter at 39wks from NEC. She contracted it at 34wks and never truly recovered from the damage i believe. The doctors told me she would only be fed breast milk. I brought it. But to my suprise they were playing with all types of food since she wasnt gaining weight! Losing a baby is so painful watching your child die a preventable painful death is horrible!

  3. Angela Sias says:

    My baby just died due to the switch from breastmilk to formula without them informing me. Am so lost, My baby Michael Lucas fought for his life. Is there anything that can be done? I didnt know about milk banks and they did not even offer me the option. They day i found out they were giving my baby formula i got so upset. They made it seem like i was crazy for being upset and told me to go outside to the garden they have at the hospital making belive i was just stressed out. I told the nurse my baby tummy is hurting because i was doing skin to skin and he kept on making a soft crying sound. The nurse said he just had heart burn that he was fine.. My baby passed away …i just want my baby back i trusted them😢

  4. Nadya says:

    Thank you for sharing your heartbreaking story. The replies have been so sad to read as well. Please inquire with your local milk bank if donor milk is funded by Medicaid/Insurance in your state. Only 6 states in the USA currently fund donor milk. Rest do not, even for premature babies at risk of NEC! Please contact your state legislators to have this changed so other babies do not die a preventable death.

  5. Lani says:

    Your story sounds EXACTLY like mine!..I cried the whole time I time I read it like “this was me!” This happened to me August 31,2008.A scar that eill never completely heal😢🙏🏾

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