My duodenal atresia warrior

Before Aidan was born, we found out that he had a congenital defect called duodenal atresia. Duodenal atresia is when the first part of the intestine, called the duodenum, hasn’t developed properly and is obstructed. This requires surgery soon after birth to correct it, so that your baby is able to drink milk.

It was very hard learning that Aidan would need surgery when he was born, and that he would need to spend an extended period of time in the neonatal intensive care unit (NICU). I knew that when my baby was born, he would be whisked off straight away to have his stomach emptied. He wouldn’t be able to drink milk until after the surgery, and would receive all of his nutrition through a thing called a long line. In some ways, this was harder than knowing he would have Down’s Syndrome. I wouldn’t spend his first night in the world giving him cuddles and getting to know him. I would spend it on my own recovering from a C Section, with him in a different ward. He’d be sent off for surgery when he was just a few days old, and be ventilated so I wouldn’t be able to hold him. It terrified me that a human so small would be put under general anesthetic and cut into. It felt like it would be such a terrible ordeal for such a tiny body.

I spent two weeks, after we found out and before he was born, googling “duodenal atresia” “duodenal atresia recovery”, “duodenal atresia outcomes”, “duodenal atresia survival rate”. I found scientific paper after scientific paper outlining complications which could occur, worst case scenarios. What I didn’t find a lot of, was real life stories of families who had gone through the surgery and recovery. Stories which could give me hope.

What happened when Aidan was born

Aidan came into the world in an operating room full of people laughing and excited to meet him. It was wonderful. Also present in the room, was a team of NICU doctors who were ready and waiting to do what needed to be done. He was whisked off, after I got my first peak at the precious boy I’d been carrying for 36 weeks and three days, to a resuscitation table which was in the corner. The doctors did all the usual checks, gave him some oxygen to help him start breathing and put a tube in through his nose and down into his stomach to remove all the amniotic fluid and bile that he’d stored there, with nowhere to go. This was to stop him throwing up and possibly aspirating (which basically means breathing it in) it, which could cause infection. Once they’d checked him over and made sure he was stable, they brought him over to me for a lovely cuddle on the operating table before he and my husband went off to the NICU, where he would spend the next 27 days of his life.

My first cuddle with Aidan

Waiting for surgery

Although duodenal atresia requires surgery in the first few days of life, it isn’t a medical emergency. Aidan’s long line meant that he was receiving all the nutrition he needed to keep growing strong and healthy. He was born on Thursday and had his surgery at four days old the following Monday. It was hard and frustrating waiting for the surgery; it felt like we were delaying “getting him fixed” and therefore delaying the day we could finally bring him home. I kept reminding myself it was a good thing though; it wasn’t an emergency, he was stable, he would be fine. It also meant that those first crucial post op days wouldn’t be over the weekend, when NHS hospitals are notorious for being understaffed.

The day of the surgery

We found out on Monday morning that he was on the list of surgeries that day, and that it would likely be some time in the afternoon. We sat down with the surgeons and anesthetist and were told a long list of terrible complications which could occur, but we were required to know about to be able to give “informed consent” for the procedure. With our heads spinning and our hearts racing, we signed the piece of paper which allowed these doctors to administer drugs to make him sleep, and cut into his body. It felt so wrong, like we were allowing someone to hurt our baby. But we also knew it was necessary for him to survive.

In amongst a cacophony of beeps and alarms, we spent the hours before his surgery sat by his incubator talking to him, singing to him and giving him careful cuddles, making sure we didn’t pull on any of the wires or tubes attached to him. Then came the surgical nurse to prepare him for surgery. His incubator was attached to a huge mobile machine, which had all the monitoring tools and oxygen required to keep him alive during the surgery. We walked with him down to the operating room, petrified, not knowing if we would ever see him alive again. I felt like I was sending my beautiful baby off to war. I remember thinking “I’ve already fallen in love with him – Please don’t take him from me, now I’ve fallen in love with him. That would be the cruelest thing”.

In amongst all those machines and wires, was Aidan

The time had come to say goodbye. We walked away from Aidan, back to my room in the maternity wing and waited. We waited for hours and hours. I watched some TV on my phone. My husband answered work emails. We waited for six hours for the phone call to say Aidan had made it through surgery.

The call finally came. We rushed to the NICU to meet the surgical registrar who told us how the surgery had gone. It had been a success. They were able to perform it laparoscopically and his intestines had shown signs of starting to work. When they went inside, they found his appendix in a funny position, so they’d removed that too. What a bonus, now we never needed to worry about appendicitis.

Once we’d been debriefed, we were able to see Aidan. We knew that he would be ventilated, so we were prepared for the shock of seeing him with a tube in his mouth, which was him breathing. We wouldn’t be able to hold him until the tube had been removed – But I didn’t care. I would be holding him again, and that was all that mattered.

Aidan post op and intubated

The Recovery

From the time we found out that Aidan had duodenal atresia, I always thought of time in three phases. The first was to keep him inside me for as long as possible to help him be strong for surgery. The second was the surgery itself. With both of those phases completed, the next was his recovery and getting him home. We’d been told before he was born that “double bubble babies are frustrating – They seem well and you want to have them at home and then they’ll have a big vomit and they’ll need to have their feeds reduced”. We were told that the average recovery time was six weeks. Six weeks of travelling in to NICU every day. Six weeks of trying to teach him how to feed. Six weeks of waiting.

Aidan had other ideas. He wanted to come home sooner, and the aspirates from his stomach reduced very quickly. He would be ready to start drinking milk soon.

The day we were due to give him his first ever milk feed, at 9 days old, his breathing got harder. He was showing signs of respiratory distress. As we sat in the NICU with our toddler, we watched as the nurse called the registrar, who called the consultant, to check on Aidan’s breathing. His condition was deteriorating. He was starting to pant then run out of energy and stop breathing altogether for a few seconds at a time. The consultant took us into a side room and explained that one of two things could be happening. It could be heart failure, from the congential heart defects he had, or he could have developed an infection from the long line. They would act conservatively. He would be moved back up to the high dependency unit, they would give him dieuretics to remove the fluid from his lungs, they would give him broad spectrum antibiotics and oxygen, they would replace his long line. He wouldn’t be getting his first milk feed after all.

We were petrified. Our friends came to the hospital and took his brother away and we sat next to his incubator willing him to start breathing normally again. Willing his body to keep fighting. Praying that he would make it through the night. With great reluctance and heavy hearts, we left the hospital late that night to get some rest, with the promise from the NICU that they would call if there was any further deterioriation.

It was impossible to sleep that night. I worried all night long. When the morning came, I was so thankful we hadn’t received any phone calls and rushed into hospital to see how he was doing. He was well. His bloods had shown it was an infection and he’d been septic, but the antibiotics were working and he was on the road to recovery.

When he was 11 days old, Aidan had milk for the first time. Suddenly he looked so much better, he was more alert, he felt more solid.

When babies are recovering from duodenal atresia, they need to have their milk feeds increased very slowly to give their intestines time to get used to the job they didn’t get a chance to practice when they were in the womb. It took another 16 days, but finally Aidan was up to full feeds and he was able to come home.

Those 16 days were long, they were relentless, they felt like they would never come to an end. I was broken and exhausted from juggling his brother at home and fitting in hospital visits around a grueling pumping schedule. But finally, he was ready to come home.

27 Days Old – Aidan was discharged from hospital

Aidan is now almost 16 weeks old and his time in NICU seems like such a long time ago. I am thankful for the time he spent in NICU; the amazing and talented doctors and nurses made him grow healthy and strong, I saw the marvels of modern medicine and the NHS, I learned about patience, strength, grace and fortitude, I learned to appreciate the things I previously saw as the drudgery of motherhood. He is doing amazingly well, gaining weight, and flew through his surgical follow up. He is a miracle. He is a fighter. He is amazing.

My little fighter

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