Postnatal Duplicity

The morning after A Life Changing Day I awoke far earlier than I would have liked to at that stage. Let me be totally honest with you.  I awoke earlier not just by an hour or two but by the entire length of the rest of my life. I had a mammoth responsibility awaiting me and I was not ready for it. Not by a long shot.

Duplicity! That’s what it was. I had been led to believe that the morning after giving birth I would be basking in the glow of the postnatal. I would have a bonny (do they even use that word anymore?) baby boy in my arms. I’d almost certainly feel as though they had opened me up with an electric tin opener and darned me back up with yarn but none of that would matter because I would have a baby! Let’s do an inventory on this… No postnatal glow, in fact I was so pale that I think my entire being was a shadow. My arms were as empty as the promises people had been making about me getting through the birth smoothly. My insides did kind of feel like they had been through a mincer but that was no biggie. What was a big deal, vital actually, was there was no baby!

My mind was a mess. I had given birth to a perfectly incomplete baby boy and somehow it was my entire fault. I wasn’t exactly sure how yet but I was responsible for him and you could bet your last breath that I was going to stand up and be responsible for my screw up. Everything that had happened the day before seemed both crystal clear and dreamlike. For a few minutes, lying between that impersonal hospital linen, I began to slide backwards in my mind. Losing grip on reality. Silently gulping for air. I wasn’t quite sure where I was. I could have been in any one of the psychiatric wards I had visited years ago. I could have been back in ICU fighting for my own life. Suddenly, I remembered that I was in the maternity ward in a Sandton hospital. This wasn’t about me. Damn it! I was not going to allow myself to slip into the dark shadows of my mind. Damn it! I was going to sit up and take control and be an adult and try to be a Mommy to that baby boy upstairs. DAMN IT!

Having gained as much control over myself as was fair to expect, I thought back to the night before. Both J and my families had been gathered in the suite when my OB/GYN and the paediatric surgeon had visited. The surgeon had clearly been called away from his family to come and attend to mine. He had slipped into the room silently in his shorts, t-shirt and flops as my OB/GYN tried his best to explain what he knew about Peanut’s condition. My doctor had even mistaken him for one of the family as he turned to leave and somehow, as devastated as I was, I knew that I was going to like him. He had explained the facts briefly. Bladder exstrophy… 1 in 50 000… multiple surgeries… some are never continent… The words barely sank in.  Before he had left he had asked us to gather any questions we had for him and advised us to avoid Google.

In the light of the not-so-promising morning, I had two things I had to do. I had to Google ‘bladder exstrophy’ and see exactly what it was that we were facing and I had to go up and see my son. HOLY MOTHER OF… That was the first and last time I ever typed that into a search engine and I nearly didn’t build up the courage to go and see my child after that. Just over twelve hours after I had been wheeled down to maternity in my bed by nurses, J wheeled me up to NNICU in a wheelchair. We left it at the door, scrubbed our hands at the basins and walked apprehensively to the very back of the unit. Attached to about a billion beeping machines lay our baby boy, his abdomen and chest rising and falling. There seemed to be tubes coming out from all over his tiny little body. A friendly nurse introduced herself. Insisted I sat. Then busied herself taking readings and emptying and filling syringes attached to tubes. I sat there for a few minutes, tears silently running like fiery rivers down my cheeks. I managed to make it out of the unit before I felt that familiar pain in my chest, the one that meant that my heart was shattering. I was sure that if I didn’t die from a broken heart I’d be sure to be poisoned by the shrapnel of its pieces.

Later that day the surgeon came to see us. They had scanned, x-rayed, poked, prodded, tested and fiddled with my tiny person upstairs as much as they possibly could over the course of the day and throughout the previous night. They had a clearer idea of what we were up against and he was there to deliver the news. I already knew we weren’t facing the worst possible case because children born with bladder exstrophy are usually born with their bladders outside of their bodies. Peanut’s was inside, which was why we couldn’t pick it up in utero. It was simply exposed through the skin. There had never been pressure inside the bladder, so the bladder had never closed and was very small. The urine filtered straight from the kidneys into the bladder and from the bladder through a hole out of his abdomen. This was a massive infection risk. The surgeon then explained that all of his organs were there. Internal and external. He was incredibly lucky to have a fully formed and normally sized penis and scrotum.  Although at this stage the penis was nonfunctional as the urine was coming straight out of the bladder. His umbilical cord was positioned right under the penis, meaning that one day you wouldn’t see his belly button when he wore a costume because it would be so low. He had two urethras and the surgeon was particularly excited about this because he was one of only seven documented cases in the world, like his, to have a urethra and the only one to have a double urethra. Finally, children with bladder exstrophy usually have hip dysplasia and this was the case with Peanut. So, what did all this mean? Peanut would need surgery. They would use a piece of bowel tissue to close the bladder and would use the two short urethras to make one that extended to the end of the penis. A catheter would be inserted to keep them open and help them to grow. They would move the entire belly button up to where the belly button should be and insert the umbilical cord there to fall out as it would have anyway, leaving a new cosmetic belly button. They would have to bring his hips together to fuse the pubic symphysis. After that his legs would be up in a mermaid sling, hanging in traction, for three weeks. We were looking at about six to eight weeks recovery. He had been consulting with some of his colleagues to make sure he got this all just right. Then he dropped the biggest bomb of all. The surgery had to be done as soon as possible. It would be done on Thursday night. When Peanut was three days old.

I don’t remember much about the next couple of days. J and I were still staying in the suite in the maternity ward. I can’t tell you if I was in pain or not. My pain was completely irrelevant. I had given up on the wheelchair after that first trip to NNICU despite orders. I took the pain pills and the sleeping injections. Other than that I spent as much time as I could next to the tiny little body upstairs. We were allowed to hold him once but that was about it because of risk of infection. While millions of mothers were holding their newborns to their breast or cradling them in their arms with a bottle, I was allowed to hold the little syringe about 20 centimeters above his head as they poured the formula into it and it drained through a tiny tube into his nose using gravity. Once again I felt like the biggest failure of a mother. I spent plenty of time just staring in wonder at this little human. He was absolutely perfect except for that tiny area around his lower abdomen. Some of the time his eyes were open, most of the time they were closed. I spoke to him anyway. I told him how much I loved him. How sorry I was for screwing up, for ruining his life before it had even begun. I told him it was okay to be scared, that I was petrified. That I was scared for him, I was scared that he was hurting, I was scared that he would have to hurt more and more than anything that I was scared to death that I would have to go through the rest of my life without him. We srarted to read to him at night. We began with a book I’d been given as a gift for my baby shower, Audrey Amaka, The Brave Little Giraffe. I told him how brave he was and promised him that if he fought hard enough that we would take him to see a real giraffe just as soon as he was big enough.  It was during those early days that Home Affairs came and we registered him. We had had his name picked out for months even though very few people knew it. Peanut officially became Nate. I spent a lot of hours sitting there when he was sleeping with silent tears running down my face. What I never ever did was fall apart beside him.

Thursday arrived far too quickly. I spent the day dividing my time between talking to Nate, filling out consent forms and waiting on a chair outside NNICU because the nurses don’t like you to be there when they work on your child. They were doing a lot of work on Nate. The paperwork you have to fill out before surgery is fairly tiresome. The paperwork you have to fill out before a newborn has surgery is absolutely mindboggling, though quite understandably so. However, even some of the regular questions caused me to get quite distressed. Age? 0 Years 0 Months 3 Days (How could you send a baby that young into theatre?) Allergies? Nil known (How the hell should I know? You haven’t given me a chance to find out yet!) Smoker? NO (Are you f*#cking kidding me?) I know it’s a standard form but the injustice of it all almost made me physically ill. I had to fill out, in my own words and preferably using no technical terms, what the doctor would be doing during surgery. My mind was in such a state at this stage that I actually had very little idea. I think it read something like this:

They are going to close the bladder using bowel tissue. They are going to join the 2 wee pipes and extend them to the end of the penis. They are going to close the hips and put the legs in traction. They are going to give him a new belly button. They are going to do anything else Dr may or may not have mentioned he needs.

It was during one of the times while we were sitting outside that the surgeon came to see us. He explained that Nate may need blood (I’d already signed consent for that) and that the surgery would be lengthy and delicate (probably about two and a half hours). Nate would come out on a ventilator and would stay sedated and on the ventilator for days to restrict his movement. He was going to have a lot more tubes and pipes and a lot of drains and it would be hard to see him with his legs in the air. I wanted to know if his lungs were strong enough for what he was about to go through and I will never forget the almost cocky smile the surgeon gave me as he replied, “Have you seen him? Psshh!” The anaesthetist arrived at that moment and he introduced us. I remember thinking that this was the most extraordinary woman I had ever met in my life and if I had to trust anyone with my child’s life then I was so glad it was this team of people. She went through the same drill about the sedation and ventilation.

Shortly before 5pm on the first Thursday of his life, the anaesthetist walked into NNICU and walked Nate into theatre. The whole time that she was pushing the radiant warmer she was chatting away to him as if she was just taking him for a walk. We were allowed to walk with to red line. She stopped there and let down the side so that I could give my beautiful baby boy a kiss on the forehead. Only the third time I had been able to do this in as many days. She pushed him away, smiling and waving at us. I stood there with tears welling up in my eyes and turned and walked out of the theatre entrance.

Once outside the automatic doors I began to cry. I wanted to run back in there and find them. I wanted to beg and plead with them to stop. To tell them I’d changed my mind. Tell them that the risks were too high and to just give me my baby boy back. Tell them that they had been wrong about everything. That he would be fine if they just gave him to me and let me love him. I did none of this. I walked back to my maternity suite and began the long wait with our families. It was the longest four hours of my life. I consumed so much caffeine that I could practically hear colours. I had no idea if I would ever see Nate’s tiny little face again or hear his perfect little cries. The wait for the surgeon became too much and J and I walked to the NNICU. We walked in and there, in the back corner, was Nate’s radiant warmer with a lot more machines around it than before. The doctor, anaesthetist and a lot of nurses were bustling about, trying to stabilize him. His monitors were going crazy.

I felt like my heart had stopped.