After 3 surgeries in 4 months, the premature baby can finally poop from his butt

The previous article told about my thrilling experience of "monochorotic twin amniotic" pregnancy and delivery. Although the fetus suffered from intrauterine growth restriction, I eventually welcomed the premature sisters safely through cesarean section.

I thought I could breathe a sigh of relief after the two sisters were born, but I didn't expect that premature babies still have many hurdles to overcome.

Immersed in joy,

The neonatology department called

On the cesarean section operating table, I only saw the babies' butts and never saw their faces. Then they were sent to the neonatal department.

As soon as I entered the neonatal department, I received the third critical illness notice in my life. The doctor repeatedly emphasized the various problems that premature babies may have, the first of which is breathing. Fortunately, the baby was doing well and breathing independently without the need for a ventilator. I felt relieved a little.

I won’t describe the various pains of pressing the belly, changing the gauze, applying oxytocin, passing gas, and getting out of bed after the cesarean section. The birth of the sisters overshadowed all these pains. My parents rushed to the neonatal department to deliver things. The nurse took photos of the sisters and showed them to us. Everyone was immersed in joy.

It was not until the 9th day after the baby was born that I received a call from the neonatal department. The doctor said that my sister vomited after feeding and there was blood in her stool. At the same time, the abdominal upright X-ray showed a little bit of suspected gas in the upper abdomen, but it was not certain. The doctor told me that I needed to observe and fast to see how the condition changes. I couldn't sleep that night. I tossed and turned thinking about going to see my sister the next day.

Early in the morning, my sister was brought out of the neonatal department by a nurse for a follow-up check-up. It was the first time I saw my baby so closely. My sister had a small, pointed face and big, round eyes. She was very sensible and would look at me whenever I called her baby. Seeing how cute my sister was, it was hard to imagine how much pain she would have to face next.

Need surgery,

I calmly signed the consent form

While my sister was filming, I had a bad feeling. Although I didn't want to believe it, I still secretly looked up some information online and learned about a common problem in premature babies, neonatal necrotizing enterocolitis (NEC).

After the film came out, I received the fourth critical illness notice in my life. The doctor talked to us and said, "It is not recommended to continue observation, because there is free gas above the child's abdomen, which means that there must be a perforation in the gastrointestinal tract and surgery is needed. As for the location of the perforation, it needs to be explored during the operation. The length of the intestine to be removed during the operation is not certain. If it is long, the child may suffer from short bowel syndrome, and the absorption will be poor in the future, and it may not grow up."

After hearing what the doctor said, my grandmother and my great-grandmother started to cry, and I roughly guessed what the problem was because of the information I had looked up earlier. It was the first time I found myself so calm in the face of such a situation. I asked the doctor about the risks of the operation and whether a small intestinal fistula would be performed after the operation, and the doctor answered one by one.

Knowing that there was no room for maneuver, I, a new mother, solemnly signed the consent form for the operation for my child. There was no hesitation, no shaking hands, no tears. I was really calm because I firmly believed that my sister and I still had a long fate. I still wanted to wait for her to call me mom and watch her grow up.

Resection of necrotic small intestine,

On the belly

"The child is too young, anesthesia is very risky, small intestine is perforated... If the infection is serious, peritonitis may occur, and there are various uncertainties. It is very likely that he will not survive." During the more than five hours in the surgery waiting room, the doctor's words kept repeating in my mind.

During this period, my milk supply increased too much, and I was worried that the doctor would not be able to find my sister's family after the surgery, so I quietly found an empty corner, asked my husband to stand behind me, and took out a breast pump to express the milk.

I would like to thank one of my colleagues, who is also a young mother. She stayed by my side during the surgery and showed me a lot of care after the surgery. She also offered to help me. The leaders and other colleagues in the office also took great care of me during my pregnancy. All these made me feel the beauty of this world. My sister has just come into this world. She will definitely grow up healthily and experience this world in person.

The operation was over after more than 5 hours. When my sister came out, she closed her eyes tightly and her face was pale. Just one look at her, and I couldn't help but burst into tears.

My sister was quickly sent back to the neonatal department, and the surgeon explained the operation to us: the perforation was about 5 cm away from the ileocecal valve, and there was a 2 cm long necrotic small intestine lesion with a black-red color, which had been removed. There was a slight crack on the outer wall of another section of the small intestine, but because the blood supply was good, it was only sutured and not removed.

During the operation, the doctor found a lot of feces in the abdominal cavity. After flushing, he performed a small intestinal fistula on my sister, which means drilling a hole in the abdomen, connecting the proximal small intestine to the hole, and defecating from the belly, allowing the distal intestine to rest for a while.

The doctor said that if the child recovers well and gains weight to 10 kilograms, he can come back after 3 months to close the fistula, that is, reconnect the two sections of intestine and put them back into the stomach.

Both options are dangerous.

I can only gamble my sister's life

After my sister's surgery, I was also nervous and exhausted at home. I was very afraid of the phone ringing, especially when I saw a call from the neonatal department. What I feared really came true. At 10 o'clock in the evening on the third day after the surgery, the doctor notified the family to rush to the hospital for a talk.

The atmosphere of the conversation was very serious. The doctor said that there was no fecal residue in the abdominal drainage fluid on the second day after the operation, and all that came out was pink blood. However, fecal residue appeared again today. This is not a good sign, and it is very likely that perforation has occurred again.

The doctor's words were like a bolt from the blue. The child's grandmother couldn't stand it and squatted on the ground. I was also at a loss. The child's father was working the night shift, and I didn't know how to make a decision next.

The doctor added, "This situation may require surgery, but two operations within three days can be fatal for such a premature baby. However, without surgery, perforation and infection can also be fatal to the child. You parents should consider this carefully. If you choose surgery, sign the consent form now and we will perform the surgery immediately."

After a short silence, I called the child's father. After listening to the situation, there was also silence on the other end of the phone. I knew that I had to take a gamble now, using my sister's life as a bet. I blamed myself for not being a competent mother. If the child had stayed in my belly longer and developed better, maybe I wouldn't have to suffer like this. However, there was no such option.

After weighing the risks of surgery and conservative observation, I finally decided to observe conservatively for one day. I received the fifth critical illness notice in my life and signed a decision letter not to agree to surgery and choose conservative observation. My family dragged their tired bodies back home, not knowing what was waiting for us...

Successfully passed the level,

Take two little ones home

The phone didn't ring the next day, so we called the doctor to inquire about the situation. The director said that they were observing the situation. There was still some fecal residue in the drainage fluid, the infection situation had not changed much, and the child had a low fever.

On the third day, we still couldn't be with the child. The nurse took a photo of my sister. Seeing the child with various tubes inserted, my eyes were wet again and again. The situation improved that day. There was no fecal residue in the drainage fluid, and yellow liquid was drained out. The infection was getting better. The doctor said that the baby was doing well, and the wound should have healed, so we could continue to observe.

Time passed day by day. On the 8th day after the operation, the doctor said that he had tried to feed my sister 5 ml of milk. Her bowel movement was good and he was slowly adding more milk.

In this way, the elder sister passed the big hurdle, and the younger sister also caught up with her sister in weight. I thought the two sisters would be discharged from the hospital after the confinement, but unexpectedly, after 30 days, the hospital called and said that the babies could be discharged. One weighed 4.3 jin and the other 4.7 jin. I took the two little people from the nurse's hands, and I was overwhelmed with emotions.

Because my sister had an intestinal fistula, I watched videos and read books during the confinement period, joined several baby fistula groups, and learned about fistula care from the nurses. But when it came to actual practice, I was still in a mess, and changing the stoma bag every day became my biggest headache.

Washing buttocks and changing diapers are also a kind of happiness

My sister barely weighed 12 kilograms when she was more than 3 months old, but the COVID-19 pandemic delayed the fistula surgery for a month. After the surgery to connect her intestines, my sister did not defecate for 7 days. She underwent an emergency second surgery, and intestinal atresia was discovered. After the intestines were cut off, they were reconnected. My sister defecated on the second day after the surgery.

After the fistula closure surgery, my sister fasted for half a month and lost a lot of weight, but she was finally able to poop from her butt. Although she pooped more than 10 times a day and her butt was red, I still enjoyed washing her butt and changing her diapers.

Today, nearly 5 months after the operation, my sister's weight has increased to more than 16 kilograms, and the number of times she poops a day has returned from more than 10 times to once a day.

Although she is still small and cannot compare to a full-term baby, she is smart and can make the sound of "Mom and Dad" every day. She can already sit and play with toys and lie on her stomach to grab things. Seeing this, I am really satisfied.

Sister, thank you for choosing me as your mother!

Doctor's comments

Zheng Xu | Chief Physician, Neonatology Department, Beijing Children's Hospital

Premature babies are those born before 37 weeks of gestation. In addition to low birth weight, they also have different degrees of immature organ development. Premature babies are very fragile but also very strong. After leaving their mother's womb, they need the help of doctors, nurses, parents, and gradually regulate their body temperature, breathe, feed, and defecate on their own. They really have to overcome each level and grow up little by little.

The digestive system is closely related to the survival, growth and development of premature infants. Coordinated esophageal motility in premature infants does not appear until 32 weeks of gestational age; gastric emptying in premature infants is also slower than that in full-term infants. In addition to the esophagus and stomach, premature infants under 31 weeks have almost no propulsive activity in the small intestine, and the sigmoid colon and rectum are relatively long, which significantly prolongs the time for meconium excretion. Coupled with insufficient activity and secretion of digestive enzymes, premature infants are prone to feeding intolerance, constipation, and even neonatal necrotizing enterocolitis.

Necrotizing enterocolitis is a common gastrointestinal emergency in newborns and an intestinal disease caused by the combined effects of multiple factors. High-risk factors include immature intestinal development, incomplete establishment of intestinal flora, formula feeding, ischemic hypoxia damage, etc. Because premature infants have weak intestinal motility, low digestive enzyme activity, imperfect intestinal mucosal barrier, long meconium excretion time, and low immune function, food accumulates in the intestine and bacteria multiply, which leads to infection, inflammatory damage, and necrotizing enterocolitis. As the disease progresses, the intestinal mucosa may bleed, erode, and necrotize, and transmural necrosis will cause intestinal perforation.

In the early stages of the disease, babies will experience abdominal distension, vomiting, and undigested milk retention in the stomach. As intestinal inflammation worsens, babies will experience blood in the stool, worsening abdominal distension, abdominal tenderness, weak mental response, respiratory arrest, bradycardia, shock and other systemic manifestations of severe infection. A clear diagnosis requires a combination of symptoms, signs, abdominal imaging examinations and blood indicators reflecting infection.

If you are like the baby in the article, and unfortunately suffer from necrotizing enterocolitis, the basic treatment is to fast to let the gastrointestinal tract rest, decompress the gastrointestinal tract to reduce abdominal distension, avoid excessive tension in the intestine, and improve the blood supply to the gastrointestinal tract. Use antibiotics for anti-infection treatment, and give appropriate intravenous rehydration and intravenous nutritional support.

However, if the disease progresses rapidly and shock, respiratory failure, intestinal necrosis, or intestinal perforation occurs, stronger life support measures will be required, and surgical evaluation and timely surgical treatment must be performed.

Laparotomy and enterostomy are common surgical procedures for necrotizing enterocolitis. The surgery helps control the infection in the intestine and abdominal cavity by removing the necrotic or perforated intestine and prevents the disease from getting worse. Just like the baby in the article, the diseased intestine is fixed to the abdomen, just like a new "anus". Doctors usually call it the proximal stoma. Feces and intestinal fluid can be discharged from this new "anus". The intestine at the distal end of the lesion is sometimes fixed to the abdomen, which is called the distal stoma.

After surgery, the milk eaten will be discharged through the stomach and small intestine. If there is less viable small intestine and the distal intestinal tract lacks the function of reabsorption, the baby is prone to diarrhea, malnutrition, dehydration, and electrolyte imbalance, and needs intravenous infusion or intravenous nutrition therapy. In the case of repeated diarrhea and dehydration, doctors and nurses are sometimes required to collect the loose stools discharged from the proximal end and re-inject them into the distal intestine to reduce the loss of intestinal fluid and electrolytes.

In addition, although the operation is done, the recovery of intestinal inflammation is a slow process, and some children may still experience intestinal necrosis, perforation, or post-inflammatory intestinal stenosis after the operation. Just like scars will appear if the wound on the skin is deep, the intestinal wall may also have "scar contracture". If inflammatory stenosis occurs, intestinal obstruction may occur if the intestinal tube is anastomosed too early. Therefore, it is generally recommended to close the fistula 6 to 12 weeks after the fistula is created, when the child's weight grows to more than 3 to 4 kg.

Maybe mothers will say that premature babies have immature gastrointestinal functions and cannot digest milk, so can't they just give them intravenous nutrition instead of milk? Actually, this is not the case. In the late pregnancy, the fetus can swallow 200-300 ml of amniotic fluid every day, which contains some protein. These fluids passing through the gastrointestinal tract are very important for the maturation of the digestive tract structure and function.

If fasting for a long time, it will lead to atrophy of the intestinal mucosa, making it difficult to establish intestinal flora, and it will not prevent necrotizing enterocolitis. In addition, long-term use of intravenous nutrition may also cause adverse reactions such as liver damage, cholestasis, and dyslipidemia. Therefore, it is very necessary to start gastrointestinal feeding for premature infants as early as possible.

What is the best food for premature babies? Breast milk. Compared with formula milk, breast milk is better in immunity, nutrition and promoting gastrointestinal function maturation, and has been clearly proven to reduce the incidence of necrotizing enterocolitis.

Therefore, if conditions permit, it is very important to start gastrointestinal nutrition and breastfeeding for premature infants as early as possible.

Sharing of personal experiences does not constitute medical advice and cannot replace the doctor's individualized judgment on specific patients. If you need medical treatment, please go to a regular hospital.

Author: Long Dada

Editor: Dai Tianyi