Pyloric Stenosis: A Mother’s Story
I remember being pregnant and waiting, wanting nothing more than for him to make his entrance into the world. I worried about all of the typical things that a mother worries about, whether I will raise him right; give him everything he needs, whether he would grow up happy, and would he be healthy. Those were the main things that I worried about. When he arrived healthy, him getting sick was the last thing from my mind.
My son, Owen, was born April 27, 2005. I couldn’t have been more delighted. He was as healthy as can be, perfect Apgar score, good weight, and looked beautiful. Everything had gone better than I thought. Twelve hours after he was born, I took my little miracle home.
Things were great for a little over a week. No screaming all night, no baby blues, I was tired, but I didn’t feel overwhelmed with exhaustion. I couldn’t believe that things were going so good. Only it didn’t last.
He was only a week and a half old and he seemed to sleep less, cry more, and was always irritable. I thought maybe he was getting a bit of colic. He spit up a lot, but the biggest thing that I noticed was he never had a bowel movement. I called the pediatric advice nurse and she told me that it sounded like constipation and because I was giving him formula occasionally, it was common. She had the doctor call and she told me to give him �¼ of a glycerin suppository and he would be fine.
The suppository didn’t work as well as I had hoped, it had been five days since he had gone and this only made him go a very small amount. I waited a few days and called the doctors again, this time demanding an appointment. He was now spitting up, what seemed like his whole bottle, and he constantly made choking sounds right after he ate. I hoped the doctor could find the problem and fix it.
The pediatrician told me that he probably had reflux and that he should sit up after he eats, and be burped more often. She said the constipation was because he was probably adjusting to the iron in the formula and that as long as he went some, he was fine.
Another three days had passed and he had shown no improvement. He was three weeks old now and I was sure that it wasn’t normal to have as few bowel movements as he did in those three weeks. His spitting up had gotten a lot worse and now I knew he was spitting up all of what he ate. He always wanted to eat and never seemed full. I started to notice a small lump right below his sternum. It was only there after he ate, but seemed to go away as soon as he spit up. I was starting to get terrified that something was horribly wrong.
On May 23, He was as a lot sicker than he was when I put him to bed the night before. He couldn’t keep anything down and he wouldn’t stay asleep because he always wanted to eat. He wasn’t getting better and I had done everything that the doctor had told me. I kept telling myself that he was fine and that there wasn’t anything that the doctors could do. I had spoken with two different doctors and many advice nurses and they all told me he would be fine. That night, I couldn’t believe that anymore.
He started making what sounded like a choking noise and spit up, for what seemed like forever, then fell asleep. I started crying and had my mom take him while I called the doctor. They told me that they didn’t have any appointments left for that night, but if he was lethargic and weak, to bring him to the emergency room. If you have ever been to the emergency room, you know that is the last place you want to take your newborn, but at that point I didn’t have any choice. He needed to be seen, and it couldn’t wait until the next day. In the time that I was on the phone, he had spit up about 6 ounces, and was not responding to anything we did. We rushed him to emergency, and that started the longest, hardest, three days of my life.
In emergency he was seen by the triage nurse, who assessed him and checked him for signs of dehydration. He told us that he was definitely sick and needed to be seen, but would make us an after hours appointment in pediatrics. He got them to fit us in a half an hour later, so we went to the pediatric department to wait.
It wasn’t long before the nurse was there to take him to a room. The doctor followed shortly and not a moment too soon. I fed the baby just before we were seen and the lump in his stomach had just appeared. It only took her a minute to tell us that she thought he had Pyloric Stenosis.
Pyloric Stenosis is a narrowing in the lower stomach where food passes into the small intestine. It prevents anything from passing out of the stomach, causing projectile vomiting. It is very common affecting around 3 out of 1000 babies, and is almost four times more common in first born boys. It is something that is also known to be hereditary. It can affect a baby between the ages of two weeks to two months, but usually shows up around three weeks of age. It isn’t something that is known to a lot of parents until it happens to their baby. My oldest brother had gotten it around 5 weeks old, so my mom knew what to expect
The doctor told us that she would have an ultrasound ordered for that night and have it checked. While she went to order the test, he spit up again and it was a good twelve ounces this time. She was sure by then that he had it, and I hoped with all of me that it was. I knew my oldest brother had it when he was five weeks old and that he was perfectly healthy now.
We went to have the ultrasound done and it was hard. I had to hold him still while they did the tests. They were unable to tell and asked me to feed him so that they could get better images, so I did, knowing what would happen soon after. I had to ask my mom to hold him while I took a breather. I hadn’t eaten but once that day, and breast feeding him had taken what was left of my energy. I felt sick and was exhausted. After they had four different people view the ultrasound, they were inconclusive and told us they would get the results to the doctor and to go back to pediatrics and wait.
The doctor came out to see us and said that they were unable to make a positive diagnosis, so she was going to have him admitted to the hospital to have him put on fluids and then have a different test done in the morning. I had more than I could take of seeing him sad and in pain, so I asked my mom to stay while they did the blood tests and put the IV in. I went home to call the baby’s dad, who lived in Canada at the time, eat, and get the things I needed for the stay at the hospital.
I couldn’t sleep that night because I was up watching my son all night. I couldn’t sit and hold him because he was hooked up to things and the wires weren’t long enough to reach the pull out chair they had given to me. It was hard to take in seeing him like that, and I couldn’t feed him anymore because they were giving him fluids. I left the hospital the next morning more tired than ever. I had my mom stay again while I went home to shower and get some sleep. At around 12:00 pm, my mom called and told me that they had already done the test that needed to be done and decide that he definitely had pyloric stenosis. They were transferring him to another hospital about a half hour away to get surgery that was already scheduled for 2:00 pm, and I needed to get back to the hospital right away to sign the forms for transfer. I rushed back to the hospital, terrified because the reality had sunk in that my baby was going to have surgery before he was even a month old.
When I got to the hospital, the transport team had still not arrived. My mom and my grandmother told me that they would leave and drive to the other hospital to meet us, as soon as the transportation was there. In forty five minutes they arrived and my mom left. They came up and told me that I needed to sing some forms and we would be ready to go. While I was signing, they asked if I had a way there and I told them that I was riding along. They told me it wasn’t something they usually allowed but they would make an exception.
Owen Started screaming when they had to strap him in to the bed. I wanted nothing more than to pick him up and comfort him, but I couldn’t. They told me not to show him that I was nervous and to talk calmly to him until they were able to move. It is something that is easier said than done. He calm down as soon as we got in the ambulance and the ride was quiet enough for me to get a quick nap.
When we arrived at the hospital, they took him to the surgery ward. My mom came and met me there. One of the nurses came in and told us that his surgery would be pushed back because the doctor was in surgery doing another operation. He was put in a different gown and given more fluid. An hour later my dad, sister and brother-in-law showed up. I was too busy being worried to pay much attention.
The anesthesiologist arrived a while later to talk to me about everything that he would do. When he got to the part about what risks there were, in young infants especially there is a chance of a reaction to the anesthesia and inhaling vomit into his lungs which could cause pneumonia or even death, I just about lost it. He told me that the risks of not having the surgery far outweighed the risks of having it and I consented. I kept thinking about babies that are born with severe conditions that require surgery right after birth and how they survived, I knew I had to do this for his health.
Shortly after meeting with the anesthesiologist, the surgeon arrived and told me they were ready to take him in. They told me a bit about what they would do during the procedure. Most of the time they are able to fix the block by going through two small incisions near his belly button, but in some cases they are unable to fix it accurately that way and may need to cut his stomach. They finished telling me about the surgery and told me that I had time to go eat and freshen up, then to go to the waiting room and they would be there to talk with me when the surgery was complete, or if, God forbid, there were any complications. Then everyone kissed him goodbye and they carried him away.
I went to get something to eat as I hadn’t ate anything for awhile now, but it was hard to have an appetite when my baby was going through surgery. I called the baby’s dad and gave him an update. At that time he told me he had got a flight and would be arriving the next day. After speaking to him I hurried to the waiting room where I had to register.
While I was in the process of getting registered, they told me that the surgeon had called looking for me, but they were unsure why and they would get the message to her that I was in the waiting room and find out what her message was. I went back to sit down and couldn’t hold it together anymore. I thought that something had gone wrong and that maybe they were trying to get a hold of me to try and let me know. I ran out in the hall and cried uncontrollably. I was sobbing that nothing could happen to him and how much I loved him. I was so distraught. My mom tried to comfort me as I prayed non-stop for God to keep him safe and not let anything go wrong. Everyone else prayed silently as well.
My mom finally couldn’t handle us waiting anymore and went t ask if they were able to reach the doctor yet. They said the doctor just wanted to send the message that they had started and would be out to tell us how everything was when they were finished. I was angry that the nurses couldn’t just get that simple message to me. I had panicked and lost control for what I thought was bad news, but was too focused on the well being of my son right then to care.
45 minutes after they had taken him away, the doctor came in to tell me that everything went great and that he was in recovery. She took me right over to see him, but I was the only one allowed in the recovery room. When I got there he was still not completely awake and looked a bit uncomfortable. The nurse told me that he was given pain medicine, and that may keep him asleep. They told me that he would be there for awhile and that I should take this time to make any phone calls or get a drink and that I could go right back in as soon as I was finished. They told me it would be another hour or so before he was moved to the children’s floor, and that they would not leave until they told me first.
Assuming this may be the last time I was able to get a drink and go to the restroom, I left. I hurried with all of my might to get back and when I did, the waiting room reception was closed. Somebody told me that they would call on the phones in the waiting room if they had any information regarding any of the patients. I wanted to go back to see him, but they wouldn’t let me. We waited there for 20 minutes and talk to somebody. As we were talking to him, he asked who we were waiting for. I told him that we were waiting for my son to be moved and everything that happened. He told me that he seen them wheeling a baby out and taking him to the children’s floor and described my son perfectly. Now I was really angry.
We went up to where they were supposed to have taken him and told one of the nurses the story. They said he had been brought up a while ago and took me to him. There he was laying in a crib in a room with two other patients and their families. I was sad that he had been brought here and left alone. Anyway, he was awake then, but I was still unable to feed him. They had me pump so that I could try giving him some milk in two hours to see if he could keep it down. The doctor came in to talk to me and said everything looked good and that if he was okay in the morning, she would probably let me take him home that night. It was late and I was tired, so I had my mom stay with him for a couple of hours while I went to get some sleep in the parent resting room.
I called his dad to make sure that everything was set for his flight and to plan out getting him from the airport. I played some video games that they had in the room, and then I went to sleep.
I woke up around 3:00 a.m. so that my mom could leave to work and I could be with my son. He looked better and my mom had told me that he had taken some milk but that he spit up as soon as he was finished, and that I could try again next time he woke up. I held him for a while and then went back to sleep.
He woke up about 2 hours later and was ready to eat. He had trouble drinking and kept choking every time that he got very much. At one point he started choking badly and wouldn’t catch his breath so I screamed for the nurse. They came in and started using a tube to suck out what he had sucked down the wrong pipe. I was panicked, but he was alright. He ate a small amount and never spit up more than what is normal for a baby his age. That was a good sign.
Around 8:00, I put my bed away and got up. I fed him again and he seemed to take it okay. I was overly hungry at this point, but didn’t want to leave him even though the nurses insisted. I waited for my sister to get there and I and my brother-in-law went to get something to eat while she sat with the baby.
The doctor got in around 12:00pm and said that he looked great and was eating well. She said she would release him but that I need to keep giving him Tylenol for the pain and the post operative fever he had. I was happy that he was able to go home and that we wouldn’t have to stay there another night.
My mom got back around 2 pm and they still hadn’t finished his release forms, but it wasn’t long before they would be finished, so we packed everything up and got him dressed to go. They said he was able to go home, gave us some home care instructions, had me sign some papers, then we were free to go.
Things went well and he never had any further problems. He healed up well, and at his check-up two weeks later, he was fine.
Owen is now 13 months old and as healthy and happy as can be. He had to drink soy formula when I stopped breast feeding because he was unable to tolerate regular formula, but now he drinks regular whole milk, and other than gas every now and then, he seems he can handle it fine.
We are all going to encounter things that are tough as parents, but they may be something that is better for our children in the end. It is our job as parents to decide what is best for them and how to handle it. I am happy with how things turned out for us, but it is something that I wish he never had to go through, and that I never wish to go through again.
