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Breastfeeding my Hirschsprung’s Warrior

The beautiful bond created and nurtured by breastfeeding my first child was one of the very best things I have ever achieved in my life, so when we found out I was pregnant with our second child I was over the moon, as I could not wait to start this new breastfeeding chapter. I continued to feed my eldest through my entire pregnancy and then went on to tandem nurse both boys for 3 months.

My eldest, Ivan, had absolutely thrived on breastmilk and our youngest for the first 3 months was thriving too. Suddenly, his weight completely plateaued and the nagging feeling that I had in my gut was getting worse. Joshie always had problems passing stool – yet when I addressed this with the various doctors that I saw they always brushed it off. The amount of effort that Josh had to put into passing a stool never matched the actual volume that he passed. I was told to give him an antacid, castor oil or laxative suppositories and always felt undermined as “breastfed babies can go once in ten days or ten times in one day”.

Eventually after being dismissed by a supposed specialist paediatrician that nothing was wrong with my child, I decided to take matters into my own hands and began recording how infrequent his bowel movements were. I started doubting my milk supply and myself as he seemed to be wasting away in front of my eyes. I kept saying to my husband that something was desperately wrong as he wasn’t absorbing properly. I was doing the power pumping, taking the galactagogues, staying hydrated, eating well and yet still he was battling.

In conjunction with his bowel movements or lack thereof, he also started vomiting – not just a bit of milk spit up – projectile yellow vomiting. This too started very slowly and then when I began to record it, got as frequent as almost every day. By that stage, his stomach was completely distended, and you could actually see his bowels moving under his skin (a term I later learnt was called visible peristalsis).

After an absolutely awful night with little to no sleep, lots of vomiting and our Joshie in evidently excruciating pain, I made the call to get us down to South Africa. We boarded the plane with minutes to spare, not knowing where we were even going to sleep that night nor whether this was as much of an emergency as it felt like. Being small town humble Zimbabweans, we did not know what was or wasn’t possible – especially when it came to seeking health care in another country.

Early the next morning we bundled our Joshie into an uber and got to the paeds rooms where our darling paed listened intently to my concerns and then said we needed to get to the hospital as soon as possible. Luckily, the hospital was right around the corner and all the necessary testing that our doctor ordered could be done under one roof. It turned out to be a simple x-ray that picked on the severity of the issue at hand. We then met the specialist surgeon who took one look at Joshua and said he hated to be blunt but that he didn’t like what he was looking at and needed to operate as soon as possible. Joshie was rapidly deteriorating so had to be admitted straight into ICU while we waited for his turn on the theatre list.

What lay ahead was one of the longest days of my life. Joshie was too weak to feed – and because surgery was imminent, he actually was not allowed to either. He was exhausted but couldn’t settle so I spent the day standing and just holding him close in my arms and rocking him to offer what little comfort I could. Eventually at 9.30pm he was called to go to surgery and as I watched him being wheeled off down that long corridor, my heart sank not knowing whether he would make it out alive given how dire the situation was.

Having not been able to feed nor pump the whole day, my breasts were swollen and so hard that when I did eventually get to pump it was such a welcome relief and yielded nearly a whopping 500ml!!! It was well after midnight that the surgeon finally finished on Joshie and came to discuss with me his thoughts. The state of Joshie’s bowels was catastrophic, and they were actually, so close to rupturing it was frightening.

For the first time ever, I heard of a condition known as Hirschsprung’s disease or congenital megacolon. This is what was suspected in Joshie’s case but it was not the classic cut and dry scenario so only biopsies would reveal the whole truth. It took 4 long days to get those results back and for that entire duration Josh was not allowed to feed yet was sustained by TPN (a nutritional supplement that has the correct balance of fats, proteins etc) through a central line directly into his jugular. That meant in order to maintain my supply I needed to pump around the clock to keep it going. To be honest I don’t love pumping at the best of times yet in this instance I was more determined than ever. To help ease the stress and trauma of a situation, there was a specific room dedicated to pumping where I met some other wonderful moms with whom I was able to share my story and gain strength and inspiration from. I also reached out to various La Leche League Leaders to find out where the closest support group in Johannesburg to me was, so that I could attend in person. As Joshie was so sick for so long, we unfortunately only managed to attend one meeting. It was a lovely safe space run with a lot of gentleness, empathy, and support.

Eventually, we got the results back and it was confirmed that he did indeed have Hirschsprung’s disease. This is a rare congenital (i.e., you are born with it) disease in which the rectum and part of/all of the colon (and in extreme cases some of the small intestine too) fail to develop a normal system of nerve cells which leads to an accumulation of faeces in the colon following birth. It affects 1 in 5000 worldwide and 1 in 10000 in South Africa. The main symptom is the failure of a newborn to pass meconium within 48 hours after birth. (It took Josh over 24 hours to have his first bowel movement and then took an additional ten days to go from that classic black tar look to the seedy mustard yellow in breastfed babies). Other symptoms may include a distended belly and vomiting bile – bright yellow unmistakable bile. In all cases, surgery is required to bypass the affected colon or to remove it completely.

In Joshua’s case, he has a rare form of an already rare disease since he had what are called “skip lesions” which in a lot of the literature doesn’t even exist. This meant he had perfectly healthy segments of colon right next to non-functioning colon. It was ascertained that at least 50% of Joshie’s colon was affected so they had to bring out a stoma – an opening on the abdomen that is connected to the digestive system to allow faeces to be diverted out of your body and into an external pouch i.e. ostomy bag. It looks like a small pink circular piece of flesh that is sewn to your body and may either lie flat or protrude a bit.

Joshie had to have an ileostomy which is a stoma constructed by bringing out the end of the small intestine (ileum) out onto the surface of the skin. An ileum is much harder to manage given that it is classed as a high output fistula which basically meant that if Joshie got sick, his output would increase dramatically and would always put him at risk for dehydration.

Thankfully breastmilk is considered a clear liquid so when Joshie was given the go ahead to start having milk again, there was a whole supply already ready and waiting for him in the freezer. Joshie has never been a bottle-fed baby so since it had to be monitored carefully in terms of amount and tolerance, it was given to him via his nasogastric tube. The amounts would start off very small – like 20ml every 3 hours and then depending on how he was doing, would increase quite significantly. The absolute best feeling was when he was finally allowed to feed directly from me. It was a huge relief on every level and just gave us that incredible closeness. It would be so hard leading up to that as I would be allowed to hold him but not feed him yet and he could not understand why. It went against every ounce of what felt natural to deny him his favourite thing – even if only temporarily.

Joshie was a mere 5 and a half months old when his first surgery took place and prior to meeting our incredible paed, other medical professionals had been advising me to” just top him up with formula” or “he is ready to start solids just do it”. Luckily, I listened to my gut and knew that breastfeeding was the only thing that was right for him and thankfully, I stuck to my guns. Anything else would have exacerbated the problem and in fact, his bowels were so distended and in such a bad way that had we not gotten him into surgery when we did; we would have lost him within 48 hours.

After more than 2 weeks in ICU, we were finally moved down to the general paeds ward where he was now old enough to start solids yet due to all the negative experiences he had had leading up to that moment – tubes, syringes, general trauma, - he developed a severe aversion to anything coming towards his mouth. Breastmilk was not only his comfort; it was his constant, and helped him survive when all other attempts seemed futile. I had seen firsthand the countless benefits breastmilk has in terms of immunity, gut health etc. and so I knew without a shadow of a doubt that I was giving him the gift of life by persevering.

Given that Joshua was on the very bottom end of the graph, and under the guidance of our paed, speech therapist and dietitian we tried all sorts of different methods to try to increase his calorific intake. My baby Josh was NOT interested in a bottle or a cup or any other vessels other than my breasts, and in fact all those vitamins, Imodium, calorie dense formulas further accentuated his aversion and made his dependence on breastmilk absolutely critical.

Unfortunately, due to certain complications and circumstances out of our control, our Joshie ended up having a total of 7 surgeries over the course of a year. Each surgery required at least a week in ICU and every single surgery meant he had to stop feeding 4 hours prior to the operation and couldn’t feed after the operation for at least 4 days. It was incredibly tough not being able to comfort him at the breast as I ordinarily would. I would pop him in my carrier and hold him close to my chest and just walk around and around and around to try to distract him.

Luckily, for every surgery I could put on scrubs and take him all the way to the operating table until he was put under. He was always very calm before every operation yet the hardest thing I have ever had to do is walk away – not knowing how long the surgery would take and whether any further complications would be found.

Joshie had his reversal pull through surgery in June last year which was a huge surgery as it involved taking out 50% of his colon, reversing the stoma and reconnecting his small intestine to the large intestine. He had two sets of adhesions following that surgery which is where scar tissue had formed in record time and caused further bowel obstructions. Unbeknownst to us at the time, Joshie’s entire colon was in fact affected and where there had initially been the presence of nerve (ganglion) cells, there now were not, so it resulted in another emergency surgery to save his life yet again where new biopsies had to be taken and a new ileostomy put in place. This ileostomy was faring well until January of 2020 after which it retracted completely so he had to go under anesthesia once again to have his stoma refashioned.

He is now considered what they call a TCHD – or a Total Colonic Hirschsprung’s Disease; yet to add another surprising element, it turns out Joshie has nerve cells in his anus which is almost completely unheard of – especially when the rest of the colon is a write-off. This fantastic news means he should (and in fact does) have sensation in his anus and will be able to avoid being incontinent which was one of our biggest fears.

It was so satisfying to see my expressed breastmilk freezer stash build up ready and waiting for the go ahead for when he could start clear fluids again. The absolute ultimate was when he was given carte blanche to feed directly from the breast for as long as he liked. Fortunately, we never experienced any latching issues – just utter relief and contentment. I would sit and hold him the entire day until it was time to go home, constantly reassuring him and letting him sleep in my arms to try and get rid of some of the separation anxiety. I ended up hiring a hospital grade pump to ensure that I could effectively remove milk as well as keep my supply up.

Extended breastfeeding is not something very common unfortunately and it most certainly is not talked about or given its due credit. With my first son, I successfully fed him to 33 months yet always felt like I had to keep it a secret or do it under wraps. However, this time around with Joshua, keeping my supply up to ensure he receives the milk that is custom made for him is hands down the single most important achievement of my life. There have obviously been incredibly low moments when all hope seemed lost yet even our surgeon said to me that he so glad that I am still breastfeeding him as given his condition it is the absolute best thing for him and those words of encouragement gave me the strength to carry on. It has given me the confidence to openly talk about breastfeeding. I have gained respect from parties who were initially the nay-sayers, I have surprised myself in surpassing my own expectations and it is through sheer determination and devotion that I have kept my Joshua from failure to thrive.

Joshua was due to have his eighth surgery in May of 2020, which of course did not happen due to the global Covid pandemic. I have breastfed him on demand since day dot and am incredibly proud that he managed to wean successfully and very gently at an amazing 45 months old. We talked about it the entire way through, and it was only because of the knowledge and confidence I had acquired through La Leche League, that I had even been comfortable to feed for so long and in the same breath was comfortable enough to help him to wean as he was doing so much better on every level. I was equipped with the tools to do it gently and with so much love, that there was no harshness or negativity associated with it. One of my most favourite memories ever will always be snuggling up to my baby boy and letting him feed - watching his eyes become all dreamy as he would drift off into a peaceful sleep at the breast and having the whole world stand still for those moments as his breathing deepened and I got the time to study all his amazing features. Who knew that he would be a boob baby for so many years – I just tried my best to be present and soak it all up, as the moments are all too fleeting.

Joshie had his stoma reversal and pull through surgery in March of 2021 to take it to a grand total of 8 surgeries. The hospital stay was that much harder this time as he was older and wiser and seemed to know what he was in for. Thankfully, I was like a piece of the furniture in that hospital and so was given special rights to be with him for extended amounts of time around the clock. The surgery was an amazing success and even though the recovery was horrendous for the first few weeks post-surgery with the most awful nappy rash which subsequently turned to burns from the acidity of the stool, it was all worth it.

There is no denying that the last couple of years have been an utter emotional rollercoaster for every single one of us yet breastfeeding kept me grounded and gave me such a purpose. I still battle with huge anxiety issues, have been put onto meds and weaned off them, have had to take calming pills just to get through a day, have had hours upon hours of therapy and am by no means ashamed to admit. Societal pressure is very real and especially now so with social media at our fingertips. We did what worked for us as a family and I encourage you to block out the noise and do the same.

Breastfeeding is not always easy, even under “normal” circumstances, yet it is without any doubt always worth it. I have learnt to listen wholeheartedly to my gut instinct and if I as the mother am worried about him, his entire team takes me seriously. You are the advocate for your child – if someone is not listening to you find someone else who will.

In the same breath, reaching out for personal help is so important when you are feeling overwhelmed and getting professional guidance is of the upmost importance especially when trauma keeps reoccurring.

I have the most incredible support system who have given me the will to carry on when I was at my worst. I have met the most wonderful people and whether directly or indirectly, I sincerely hope I have inspired some moms to keep going on their breastfeeding journeys, as the rewards will be prevalent forever. I have learnt not to take breastfeeding for granted, as it is the most special gift a mother can give her baby. Joshie has met all his milestones within the “recommended” timelines and has no developmental issues – all these achievements I attribute to breastmilk.

My husband, my mom, my sister, our paed, our surgeon, our speech therapist and a dear friend of mine (who is also a lactation consultant) have been my biggest supporters on the breastfeeding front and have given me the confidence to carry on. Surround yourself with people who believe in you and will cheer you on from the sidelines every single step of the way.

Finally, and at long last, my heart is full of hope. When I see my Joshie playing in the mud, jumping off couches, swimming, wrestling, soclialising and just getting to be a little boy alongside his adoring big brother, I am forever grateful as it means all my efforts were not in vain. There is finally light at the end of the tunnel that seemed to go on forever, and I firmly believe with all my heart it is the benefits of breastfeeding, which have made that possible. He is our miracle child, and has captured the hearts of many across the globe. He has taught us all what is truly important in life and never to take anything for granted.

We have just celebrated his 4th birthday and are due to have his party soon. He is fully potty trained during the day and only needs pull up nappies at night when his bowels relax and he is more prone to accidents. He is feisty, determined and defiant – all characteristics he was born with that enabled him to get through this ordeal.

At long last, he cracked 18kg to place him on the 70th percentile for weight, and his height is between the 75-90th percentile – completely mind-blowing and nothing short of miraculous given that this exact same child fell off of the graph to below the 2nd percentile in his earlier days.

The picture below and the “Live Free” t-shirt he was wearing on that day were so apt. We had just come from his first paeds appointment in about 18 months, and even though he had point blank refused to be examined, one thing was for certain – he has never been in better shape. We always tell him how much of a champion he is which makes his eyes light up, his grin grow huger and his chest puff up! I cannot adequately explain how seeing him so well and so healthy before our very eyes, is just the most wonderful blessing for us as a family.

Breastmilk is often referred to as liquid gold and it most certainly is exactly that. It is the most incredibly powerful ever-changing liquid designed to meet all your child’s needs (nutritional, emotional, and physical). Its benefits never run out and in our case, they saved our Joshie's life repeatedly. Thank goodness for organisations like La Leche League who make such a tangible difference to so many moms, babies and families alike across the globe. For me personally LLLSA has been a godsend as it equipped me with the knowledge and support I needed to get through this ordeal. If you are on the fence about any aspects of breastfeeding, I implore you to give it a chance – you might just find you surprise yourself!


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