The wave oxytocin that flooded my bloodstream made it difficult to realize what really was going on in the first hour after giving birth. I was hearing things being said, but they were not registering on my emotional scale in a normal way. It was as if what I was hearing was passing though my ears; I could hear it, but it had no impact on me. I was still blissful and processing the fact that I had just given birth to my beautiful baby boy, and feeling so incredibly strong and proud of what my body accomplished. I felt surprisingly well; happy, serene, and thankful. For that reason, my recollection of all that happened in the first 2 hours is blurry, and my retelling might be slightly out of order….
Shortly after being laid down with my new baby Lauchlan and having some skin-to-skin with his father and me, Our family was invited into the room. There was so much joy and awe from everyone. I remember my Mother-In-Law came to us with tears in her eyes. “Thank you! Thank you!” she said to me over and over. I smiled at everyone, only vaguely recognizing their presence in the room as my head swam in the happiness of it all.
The midwives asked for the family to give us some brief privacy, and took Lauchlan from me so I could deliver my placenta. Oh right, I’d forgotten about this. “I’m sorry to have to do this, but its time to deliver your placenta. I will need to put some pressure on your stomach to help it out, okay?” Asked my secondary midwife “Okay” I said hesitantly. “well… it wont be pleasant” she said. And sure enough, it was (very surprisingly) one of the worst parts of my labour. The unexpected pain that shot through my body as she gently massaged my abdomen had me shout out in agony. I was not at all prepared… No one had ever mentioned to me that the placenta delivery would be just as bad, and maybe even worse, than delivering the baby. But thankfully, it was over in a matter of minutes.
My midwife took the placenta away, but said “do you mind if I take a picture of it?” Amused, I said “Sure“ and she explained to me that my placenta was very unique, and she had “read about it before, but never saw one in real life.” This fact would be something that shook us to the core, but not still much later.
learning about lauchlan
My baby boy was brought over to the scale across the room, and my family filed back in and crowded around him and the midwives. His Apgar test was being conducted while I was being served my first postpartum meal. I had expected to feel a sense of urgency when they took him from me to do his tests, but since it was all in the same room I felt fairly comfortable. And although my view of him was obstructed by my family, I was able to hear them coo and awww at every finding which put me at ease, so I sat with a smile and enjoyed my meal.
One of the midwives suddenly switched her tone of voice from gentle and positive to guarded. “Oh,” she said. “Well, hmmm” followed by a hesitation. I heard her speak the words, but they didn’t register on my emotional scale the way they should have.
“Lauchlan has an imperforate anus. It’s okay, but lets call CHEO (Childrens Hospital of Eastern Ontario) now”
The energy in the room dissolved from pure joy and excitement to a nervous questioning from everyone. My family shuffled around. I was unphased, still enjoying my hormone high, and knowing that families naturally worry and things were probably fine. The phone call made to CHEO was quick, and the midwife ushered my family out. She sat beside me on the bed and put her sweet calming tone back into her voice. “Lauchlan has an imperforate anus. It means that his bum was not fully formed, and it looks like theres no hole. That means he might not be able to poop, and getting rid of meconium is very important. CHEO wants to see him right away so we are going to get him dressed right now and take him immediately.”
I heard what she said. My honest response was a calm and cheerful “okay!”
In that moment I felt like it was mostly a precaution, and we were lucky to be so close to CHEO, a mere 3 minutes away. I was confident that whatever imperforate anus was, he was getting amazing care right away. My joyful state protected me from realizing what was actually happening; they were rushing my baby into the emergency at the children’s hospital for a birth defect that could have major implications.
I remember looking for my husband, and finding him across the room dressing our son with a very different energy than his typical relaxed demeanour. I felt like I was in a haze; I knew something was worth worrying about, but it just wasn’t coming to me. Within minutes he was leaving. He kissed me goodbye and he left with baby Lauchlan in his carseat. I realized that I didn’t have a moment to hold my baby boy since they started his APGAR test, but still, my emotions betrayed me. I remained in the happy bubble as everyone around me began to panic.
I spent the following hour (maybe longer) getting cleaned up. My primary midwife stitched my 2nd degree tear (which I didn’t even know I had until she said it was time to address it) and then my Doula gave me some Advil, walked me to the bathroom and held me for balance while I peed (which i was scared to do, but it was fine!), taught me to use the peri bottle and assisted me in the shower. They were so caring and positive with me that I nearly forgot that something important was happening with my son.
Once I was showered and dressed, my secondary midwife escorted me to CHEO. During our short drive, she explained to me “You might be shocked when you see Lauchlan. He will likely be undressed in an incubator, under bright lights with tubes in his nose and wires attached to him. Right now its only a precaution. But I want you to be ready for what you will see. It can be very upsetting, but its normal for any new baby who comes into the hospital.” I understood what she was saying, and for the first time I felt something other than joy. It was a small wave of fear.
Reality is a hard brick wall
When I arrived at the hospital, I was put in a wheelchair and brought into the emergency department. It was the middle of the night, roughly 2am and the lights in the room were dim. At the far end of the room there was a single bright light and an incubator with my baby boy in it. I stared at the scene as they pushed me towards him, and it was as if reality began to take hold with every inch that I got closer. There he was, undressed under the lamp with tubes and wires, exactly as my midwife said he would be, and still I was not prepared. I took one big shaking breath and began to sob.
Everything after seeing him in that moment became a blur of tears, hugs, and emotional pitfalls that took my breath away. Im unsure of the correct order of events in the 24 hours that followed, but I remember key things. I was not able to hold him, which devastated me. The nurses brought him a stuffed animal, which made me so happy that they cared for him more than just as a patient, but as a child. My husband couldn’t look me in the eye, but when I saw his face, his eyes were red from crying. I never saw him like that before and it threw me into tears again. I stood from my wheelchair so I could get close to my boy and touch him, but it made me feel faint. I knew I was not strong enough for him. I cried that I should be holding him, giving him comfort, and learning to breastfeed. But I was ordered to go home.
I don’t recall the drive home or going to bed that night, but I know I was instructed to do so for my recovery. It was all a blur. My husband stayed with Lauchlan so he was not alone.
When I went back to the hospital, I was greeted with news that Lauchlan not only was moved to a private room in the NICU, but he passed a small amount of meconium which meant there was at least a small opening near the anus. I practically celebrated! I felt like we were out of the woods but I came to realize laster that it wasn’t the case. I was finally able to hold him, and I was flooded again with the oxytocin that protected me after delivering my boy. My husband and I spent time passing him back and forth and cooing and snuggling our precious child as if nothing were the matter. I was unable to get him to latch to my breast (even with the help of a nurse*) so I pumped for him while my mom took a turn snuggling him.
Some time later, the surgical team came to Lauchlans bedside to deliver us the news about his condition. We learned that imperforate anus is a non-genetic birth defect that occurs in 1 of 5000 babies. It has varying levels of severity from minor to complex, and it often affect other systems of the body (the closed anus is only the visual indicator of potentially more issues) including the bladder, kidneys, esophagus, heart, lungs, spine and limbs. They didn’t yet know how severe his condition was, but they were planning a laundry list of investigative testing. In the meantime, we needed to keep the small anal opening (which was located just beneath his scrotum) open, which meant he needed to be dilated; a process by which we inserted metal dowels into his anus, to stretch the hole open as much as possible. It was a procedure we had to do 2-3 times a day, and something that the parents—not the surgical staff—had to do (since we had to continue to do it when we took him home). Its a horrifying thing for parents to do. Poor Lauchlan would scream and wail each time. I cried every time I did it, feeling horrible about putting my new born baby through pain on purpose. But this was our new reality.
Moving on up
The next day, Lauchlan was moved from the NICU to the surgical patient floor. He was watched round the clock by room-in nurses as my husband and I sleepily switched shifts. He would stay with him while I got a few hours rest and pumped for him at home, then I would take my milk to him, and spend time with him while my husband went home for some sleep. The days blur together, punctuated by failed nursing attempts, diagnostic tests, and conversations with hospital staff about results. We learned over the course of a few days that many potential IA related issues were ruled out, but surgery was imminent.
The surgical plan was to make an incision in his bottom and complete a plastic surgery of his rectum and anus. They would make an incision in his belly at his upper intestines, and create a stoma, where he would wear a colostomy bag until his bum was healed, and then it could be reversed. It sounded simple enough but there were many risks and the prognosis after the surgery is varying. The surgical team did their best to explain what could happen for him in his future; if everything goes extremely well, he may have full bowel control like any other child/adult but will likely need the assistance of some laxatives. On the other hand, we need to know that he may never have proper bowel function or control as a child or even into adulthood.
Learning this shattered me. I cried for days on end, unable to see how we could provide our child with any sense of normalcy. The idea that he would be starting school in diapers destroyed my vision of a EC Diaper Free baby. Thoughts of misunderstanding parents, child bullies, and affected romantic relationships flooded my mind every hour of every day as I tried desperately to be thankful for him even being alive, and hopefully dealing with a low severity level of a terrifyingly persistent condition. In some ways, I resented that the most joyus time of my life was being weighed down by worry and fear. I just wanted to be in the moment, enjoying my son and my new family without being haunted by these thoughts.
The universe grants Perspective
Perspective came swiftly, when we then learned about my ‘strange’ placenta. While spending time in the hospital, my husband began to do some research on what my midwife evenrually told us was a bilobed placenta and a velamentous cord insertion. Essentially, my placenta was not only divided in two, but the blood vessels that travel through the umbilical cord were exposed and abnormally inserted into the placenta. Both of these conditions are dangerous and could have resulted in stillbirth, haemorrhaging, and maternal death. Bilobed placenta occurs in 2% of pregnancies, while the velamentous cord insertion happens in just 1% of all pregnancies. Had either of these conditions been seen on an ultrasound (they were missed by the techs) my midwife would have had me closely monitored, possibly on bedrest, and had a scheduled c-section at 36 weeks to avoid complications that could lead to death. Instead, I was swimming, shopping, dancing and carrying on as if I was having a perfect pregnancy, right up until my water broke. I had absolutely no idea how close i was to losing everything.
There are no words to explain the mental leaps and disbelief that happens when you realize that, not only was your son born with a rare birth defect requiring immediate surgery, but also your pregnancy suffered two unnoticed complications that could have killed us both. It was incredibly grounding. Somehow we beat so many odds, and we were both here. Both happy and thriving.
Mu husband and I were in complete shock at this finding. How on earth did we dodge the odds? And suddenly, our boy felt like a true miracle. Not just in the way that all babies are miracles…. I mean a real one. He was meant to be here, and so was I with him. My resentment turned to pure awe and gratitude. No matter where his unique path would go, we were damn lucky to walk it with him.
Finally, we were able to take Lauchlan home. It was for a short 3 days before his surgery, but they were paradise. Being in our little nest with our new baby was everything i’d dreamed it could be. Sadly it was all too short as he had to return to the hospital for his surgery.
Surgery at CHEO
Even though I knew he was in the best of hands, my whole physical and spiritual being vibrated with nervous energy on the day of his surgery. I had nothing to fear, but fear I did. Would he remember any of this? Would he recover? What if there was a complication with the anesthetic? What if they found something that their previous tests didn’t show? What if they made a mistake and ruined any chances he had at bowel control? I could not stop running this track in my mind, no matter how hard I tried and how much I knew it was useless.
I fought tears the entire time we waited for his surgery. 3 hours later, the surgeon came to see us to tell us how it went. The surgery went well, but he did have something he had to tell us. I didnt even have time to brace myself.
“Unfortunately his urethra was nicked as we attempted to cut the wall that divided the urethra from his bowel. We had to get urology in to repair it. He will have to use a catheter to urinate.”
if it wasn’t for my husbands arms, I would have fell to the floor. Why were these things happening to my baby? Why did he have to endure such a start? I was angry. Not at the surgeon, but just at life. I was frustrated for my baby. Frustrated for us as new parents. Frustrated that I was being petty. I knew to be more thankful than this, but I just wanted to take my baby home.
Seeing him later in the recovery room was the most broken hearted I’ve ever been in my life. He was so sedated and groggy. I could see fear in his eyes. It’s not fair to see a baby, just a week old in such a state. I couldn’t hold him. I couldn’t feed him. I could give him no comfort. So I just sat at his bed and cried.
A family in Recovery
From that day, Lauchlan progressed well. My husband and I continued the dilations, now in his newly formed anus. We also learned how to empty and replace his colostomy bag and his catheter bag. It all felt nearly impossible on such a tiny baby, but we got more adept every day. We felt like nurses in our own right. And after 4 days of monitoring in the hospital, we were sent home.
I expected being sent home would be difficult. Many parents talk of the feeling of not knowing what they are doing, and feeling all to unprepared to be left in charge of a child. In a way, all that we’d gone through in those first few weeks seemed to prepare us. We were just so glad to be home. There were moments that were scary and challenging to be sure. We worried about the correct way to hold him with the bags and tubes. We were paranoid about changing his colostomy bag. But they all seemed scarier than they actually were. We were good at this. And we relied well on one another to make it through these tough times.
After two weeks we returned to the hospital to have his catheter removed. And since then, we’ve just been learning and working with our baby as he grows. We’ve been back to the hospital for follow ups and Lauchlan is doing very well. We wait patiently to hear about when his reversal surgery will happen, and in the meantime we absorb every precious moment with our miracle baby.
As we learn more about his condition, and experience the next surgery I will continue to share what this journey looks and feels like in this blog. Please subscribe if you’d like to follow Lauchalns progress.
*Nurses helped me try to breastfeed, since CHEO, even though its a childrens’ hospital, does not have lactation consultants. I learned later that they also do not have any private areas for breastfeeding.