Sam’s Story

June 24th, 2011 by William

2 days ago my wife gave birth to a full-term, 9.10 lb. baby boy. The doctors were so impressed at how big he was and alert. Upon the first night of being with our son, we noticed he was having some trouble breathing, nothing serious, just sounded stuffed up. They took him into the nursery and tried clearing out any remaining amniotic fluid that may be left in his body. All his readings, as far as, his breathing, heartrate, were excellent, but as a precautionary method he was taken to the NICU. In the NICU they treated him with antibiotics, because they saw his whiteblood cell count was a bit high. Otherwise they thought he was a very healthy strong baby. X-Rays were taken, but nothing was conclusive. In the meantime, we began breast feeding him and he took to it very well. He even filled many diapers with meconium poo.
This morning we were told that they fed him formula and a few hours later he vomitted some mucus and bile. This had the doctors do another x-ray. This time they felt that our boy has the possibilty of NEC. The doctor said that they are not sure because our boy is so big and has good numbers, but the x-rays, and bile in the vomit, send up a red flag…
So here we are scarred out of our wits and looking for any kind of positive sign. I cannot eat, sleep, or even cry at this point. My wife and I are saying our prayers, but we are trying to find solice in others who may have seen a similar scenario. To all the families who have lost a child to NEC, are truly sorry. Please advise…

7 responses to “Sam’s Story”

  1. Elaine says:

    We are hoping baby Sam is doing better each day…please let us know.

  2. Miranda says:

    Do you have any updates on Sam? I lost my baby girl to NEC and it is the most devasting event I have ever experienced. I have wondered about full term babies and NEC since I am considering getting pregnant again. I would love to know how your baby boy is doing. I do pray that he pulled this scare and the antibiotics have done their magic.

  3. William says:

    Actually, my son’s name is Sam, I myself am William who wrote the above passage. First of all, I am terribly sorry for anyone who has lost a child, be it NEC or other complication. I will begin where I left off in the story and hopefully it will bring people a piece of mind and some knowledge about this very misunderstood issue.

    Sam did have NEC or what the doctors diagnosed was NEC. He had a tube down his throat to suction out any bile or fluid, and was put on an IV of anti-biotics and nurishment because he was not allowed to have any breast milk. It helped that he was such a big baby. When the doctor first told us that Sam was dealing with this she stated that there was a 50 to 75% mortality rate, and told us of another child she lost the previous summer to NEC. Not the most encouraging words to hear, nor was the doctor’s bedside behavior when we told here that we have been researching NEC ever since we heard it was a possibility. In fact, it was almost threatening to her, that two very educated people might go out and read up on it and have real questions. It was even disheartening that the doctor was quoting from the exact same report that my wife and I read. Almost as if she was doing the exact same google search I was. Bottomline, she did right by Sam, and as over zealous as she was with certain aspects, Sam is better for it.

    I am not an expert so the following is just from my experience and my own research. There is not a lot of information out there for the prevention and treatment of NEC. From what I was told by the team of Doctors in the NICU is that Sam is the only third case they could find in any record, of being a full-term baby showing signs of NEC within the first 24 hours. This is what had them confused and flustered a bit, in that they had different opinions as to how to treat it. Some theories that we read and a doctor mentioned to us is that with modern technology doctors and nurses are spotting things they never have before in the history of childbirth. So the increase of NEC could be a minor birth defect that has been flying under the radar for years, and it sometimes may have healed itself, or resulted in the unfortunate other end of the spectrum. There was discussion as to the size of Sam whether he went home as scheduled, if he would have gotten a bit sick, but then the perferations in his small intestine would heal after the introduction of Breastmilk. I am not saying that medical treatment is not necessary, I am just pointing out that NEC is such a mystery that who is to say that it hasn’t been around since the dawn of man, or is some kind of environmental thing.

    As far as advice goes, I have two things to say. One never stop praying, my wife and I are not religious, but we are spiritual and do believe there is a force greater then ourselves. If you can hold on to hope it can get you through anything. Looking back there were a number of incidents that made my wife and I get chills thinking that one moment or incident helped Sam get better. For example, if my wife had asked for drugs during the pregnancy, Sam would have been generally lethargic when born, and his breathing might have caused less alarm, because it would have been seen as part of the demerol wearing off. If that was the case we were going to be released from the hospital the next day, with a baby who could have NEC unknowingly. That isn’t to say you shouldn’t use pain killers in labor, just pointing out the coincidence.

    Finally, DO NOT BE AFRAID TO FIGHT FOR YOUR RIGHTS AS A PARENT AND PATIENT! I was told on three occasions not to worry about Sam’s breathing, but I was persistent and finally someone took notice. My wife and I have trust in the doctors, but they are dealing with our most precious object and I want to be in on every move and decision they make. We were given some attitude about our persistence, but it was worth it.

    For the family who responded to my above post and had lost their daughter, I am truly sorry. But realize that NEC is can be dealt with, God forbid if it happens again. In my opinion, there is an energy out there that was not given the right body to host it the first time, and maybe it is waiting for a second chance.

    Sam, is now 6 months, and my wife just informed me he cut his first tooth. To this day I still watch his stomach and pray that it will remain fully healed. I am grateful for the team of doctors we had, and that there are sites like this for people to connect. I wish you all well.

    William “Proud father of Sam”

  4. Jenny says:

    So glad Sam is doing well. My full term son also had NEC (he is now almost 2!)

  5. William says:

    That’s awesome Jenny. Have you seen any residual problems in the two years? That is my biggest concern. Thanks for chiming in.

  6. admin says:

    William if you go to the Babies surviving after NEC section you may be able to reach out to other parents with that question too.
    Just a thought,

  7. Jenny says:

    Hi William,

    A little background on my son: He was born at 38 weeks, 5 days, and was 6lbs 1oz (on the smaller side). One of the first signs something wasnt right was that they could not get his temp up. Red Flag, right? Ugh. But they said “feed him, maybe he just needs some calories” – luckily he didnt eat a lot at all. He spent the night in our room, he never got up to eat and in the morning they realized he was still not at the right temp and he started having apnea spells. They told me they thought his glucose levels were just low, but they sent him to Rainbow Babies and Children’s Hospital to be on the safe side (thank God). He stopped breathing again in the ambulance ride and by the time he got there he was hypothermic. They stablized him and starting looking deeper into the problem. When i finally got to that hospital (they wouldnt discharge me from the other hospital until the next day!) I saw him and his tummy was all red and distended…but he was alert and they said he was in no pain. Fast forward (I still have to tell my full story on this website!) 19 days later (NPO, Antibiotics)…he left the hospital with no lasting effects. He never needed surgery…he just got better (Again, thank God!).

    My son is a very picky eater, hardly eats (I dont think its related) but he does suffer from horrible constipation (which we remedy with 2 oz of prune juice every night). Not sure if its related, but its something i think about.

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