Meeting James

Meeting James

Tiny Hearts Education

Meeting James

My birth story starts at 12 weeks pregnant (well actually I suppose it starts 4 years with IVF and the freezing of our precious embryos, but that is another story for another time). What was meant to be a special moment of going for a 12-week scan to see our baby's heartbeat, set off a terrifying and emotional series of events for the birth of our baby boy. COVID made things difficult from day 1. I went to the scan by myself, expecting to be able to call my husband and gush about how cute our baby looked and how well they were going. The sonographer calmly and kindly told me baby was doing fine. We saw the heartbeat, and baby was wriggling. The sonographer casually said the bladder measurement was larger than it should've been, so she'd let my midwife know, and we would be referred to fetal medicine for a more detailed scan. 

I went home a bag of mixed emotions. Excited to have seen our wee bubba, but the words of the sonographer resonated in my mind, and I couldn't shake the feeling something wasn't right. I did what you should never do in these situations and googled it "enlarged bladder 12 weeks gestation". I was met with a myriad of results of varying degrees of bad news. I mostly saved my tears and crying for the middle of the nights when I was alone with my thoughts. I treasured time with my almost 3-year-old daughter even more and held her close. I rang the midwife the next day. She was calm and said she would make a referral to Maternal Fetal Medicine, but we just had to "wait and see". "Wait and see" became a common phrase over the next few months. We received a phone call from the MFM clinic in Auckland saying to come for an urgent appointment. The news at this scan was as I had feared and the worst-case scenario of all my googling. Baby's bladder was just filling up with urine and had already doubled since our initial scan. This had huge implications for baby's growth and development. Urine forms part of the amniotic fluid, and without adequate amniotic fluid, our baby's lungs couldn't develop. As well as this, baby's kidneys were already enlarged, and the damage already done from backflow was irreversible and would only continue to get worse as baby continued to grow. Over the next few weeks and months, we had a number of appointments. It was a roller coaster of a ride. We were in lockdown, but as our appointments were considered essential services, we had to make the 2-and-a-half-hour trek from Tauranga to Auckland for our appointments. Baby's bladder continued to grow and balloon bigger and bigger. We were told to be prepared for the worse. It was beginning to encroach on the other organs, such as the heart and lungs and at any moment, it could've all been over. 

We had a small miracle happen at 21 weeks. My amniotic fluid went back to normal, and baby's bladder reduced slightly enough to be able to do a thorough scan. We learnt that it was a boy and discovered that as well as continuing concerns with his growth and development of kidney and urinary tract, he was missing a foot. "Prognosis is poor" is what the doctor's notes say. Termination of pregnancy was suggested as they couldn't say how much damage had been done to the lungs during the low amniotic fluid. And even if they were ok, the whole urinary system and kidneys would be severely affected, and this would cause long-term issues. It was probable baby would need to be in hospital after birth (that is if he even survived) for 6 months for dialysis and constant monitoring. We names him James and made the decision that we would love him for as long as we had him. The Dr. couldn't tell us exactly how big our baby would be. They make an estimate calculation based off the length, head circumference and abdomen. They estimated about 6 kilos due to his ballooned bladder inside his huge tummy! So a C-section was planned (thank goodness) up at Auckland, and this meant relocating our family from Tauranga for what would be an indeterminate length of time. We had to arrive in Auckland from 38 weeks in case I went into labour naturally. It was a terrifying time. I wrote in my diary "It's a delicate balance between faith and hope and fear. My mind constantly flits between these thoughts of "what a miracle baby he will be" and "I don't know how I'm going to cope with losing him"…. We've been given so many beautiful things for our baby, and feel so blessed with people who continually show their love. It's hard seeing all his beautiful things in the cupboard and not knowing whether or not he will get to wear any of them. I guess time will tell. We just play the waiting game now, with hope and faith and an equal measure of fear and doubt…" 

It was weird walking into the hospital about to have a baby without being in labour. I felt anxious knowing that our wait was finally over and we would get to meet our baby boy. During the C-Section, just after he was delivered, there was quiet for a few moments, and everyone held their breath as we waited for all that all-telling cry. Then it came!!! Who knew that a crying baby could bring so much joy and relief! James Daniel Kalisch was born 24th November 2021 at 10.48am weighing 3.87kg and 52.5cm. They whisked him away to do a full checkup. I enjoyed the banter from the doctors as they stitched me up, filled with hope that everything was looking up. Every now and again, I could hear a little cry from next door! How amazing! They brought him out to me all wrapped up, and I was able to see him and even hold him for a few minutes, something I never thought I would get to do. So so many happy tears, he was the most precious thing in the whole world. We knew we weren't out of the woods yet but we were another step in the right direction. I had a mild reaction to the spinal block anaesthetic and spent some of the day vomiting. I wasn't able to go and visit him until much later that afternoon which was heartbreaking, but I was just thankful that he was breathing on his own. My husband followed him to the NICU while I was in recovery. They discovered his urethra didn't connect all the way from the outside to his bladder. Miraculously, he had a tiny hole in his tummy his wee was coming out of. My husband said he saw urine project out of it about a metre in the air! This is what had saved his life and allowed him to release urine and keep my amniotic fluid levels safe enough for his lungs to develop. The doctors needed to do something to continue to release the urine from his bladder (without just a random hole in his tummy) to prevent further kidney damage. At just 2 days old, he had a small surgery called a vesicostomy to create a semi-permanent way of releasing urine and prevent further kidney damage. They create a hole just below the belly button and bring the bladder to the surface, so it drains out the hole. Pretty crazy! 

It was a whirlwind time. The Drs monitored every ml of James's feeds and urine output. He had multiple heel pricks and blood tests which was made even harder with the fact he only has one foot! The words of one of the Doctors still resonate clearly in my mind "he's exceeding expectations". I remember thinking, "that's my boy!" Amazingly, his kidney function tests were coming back within the normal range. He was healing so well from his operation that we were able to be back home to Tauranga within 3 weeks! We call James our miracle baby. I believe that early intervention and a heck of a lot of prayers saved his life. He has a rare condition called "Prune Belly Syndrome", which only a handful of people in NZ have. He'll need additional surgeries on his urinary system, and it is probable that he'll need a kidney transplant in his teens, but for the most part, he is a happy and healthy little man. He has an awesome team of specialists looking after him, and amongst the sleepless nights and stresses that having a baby brings, I just remind myself that he almost didn't make it. Fast-forward almost a year- James is just about to turn one, and I'm finally getting up the guts to write our journey down properly and hit submit! He's such an inquisitive little man, he's not crawling or walking yet, but he is getting stronger and stronger every day. His little missing foot is so cute, and he's got a prosthesis that he's getting used to wearing. It was a hard and long journey but it was worth it.

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While Tiny Hearts tries to ensure that the content of this blog is accurate, adequate or complete, it does not represent or warrant its accuracy, adequacy or completeness. Tiny Hearts  is not responsible for any loss suffered as a result of or in relation to the use of its blog content.

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