Anal Stenosis

Anal Stenosis... have you heard of it?  Mum Sheree shares her story.

“When my son was 5 weeks old, we noticed he always seemed uncomfortable. Sometimes his little face would go bright red and he would just wriggle with discomfort. He didn’t cry or scream - he just didn’t seem relaxed.

I took him to the doctor who said it was colic, and to try infants friend or gripe water. We bought everything we could find at the chemist and tried them all. He didn’t seem to be any different, so I took him to another doctor who again said it was colic and we would need to ride it out for his first three months. I absolutely couldn’t bare to think that my little man would have to be uncomfortable for at least another 7 weeks.

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When my son was born he had a small Exomphalos of his bladder. This is where a portion of the bladder protrudes the abdominal wall at the umbilical joint. He had this operated on the day after he was born. We had to visit his surgeon six weeks after the surgery to ensure everything was healing fine and to receive some tests results. I decided to take the opportunity to ask the surgeon if he had any advice on how to deal with colic. He asked me to describe the symptoms and when I explained that he just seemed uncomfortable all the time he asked to examine my sons bottom. I thought it strange but agreed. Upon the surgeon poking a finger into my sons bottom, a massive amount of poop exploded from my sons behind. I couldn’t believe it. The surgeon advised that my son had what is called anal stenosis. Anal stenosis is a narrowing of the anal canal, meaning that when my son pooped he wasn’t able to finish completely as it wouldn’t fit through his anal passage. He would have to have surgery.

The surgery was booked for two weeks time. I was so happy to finally have a solution to why my son always appeared uncomfortable, but I was frightened of the surgery. Any event where my little boy was put to sleep was not something I could be comfortable about. Having been 6.5 weeks premature he was still so small.

On the day of the surgery, I was a mess. My husband was trying to be manly and strong but he too was a little scared. We waited while he had the surgery, not speaking at all, as we were so nervous. The surgery was over within an hour and a half and our son was returned to us. He was emotional from being in a little pain and I think from being scared and not understanding what was happening. The surgery had gone well the surgeon assured us. It was such a relief to have it all over with.

I stayed the night with my son in the hospital and most of the night he just wanted to be held. By the next morning it was if nothing had happened and he was back to himself. 

Anal stenosis is not something I had ever heard of, but occurs 1 in every 5000 births and is common in boys.  My son is now 14 months old and so far he hasn’t had any issues to speak of. I feel so lucky to have had the appointment with the surgeon, as my son could have been in pain for some time as we continued to try different colic mixtures to no avail. If you feel there is something not right with your little one, follow your instincts.”

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"I thought I was living a nightmare."

Blog post by Mum and Volunteer Sheree.

It was a Sunday afternoon and I was relaxing watching Netflix, as I'd been feeling a bit off with a mild headache.  I was 33 weeks pregnant.  I remember laying there thinking surely I can't get much bigger than I currently am, and just thought I was tired from working and that was the reason for my headache.

I had a rough nights sleep that night and called in sick the next morning as I just didn't feel like I had the energy to go.  I had an appointment with my obstetrician that afternoon, but I still just thought what I was experiencing was normal pregnancy symptoms.  It was at that appointment I was told I was being admitted to hospital for observation as I was showing early signs of pre-eclampsia.  I was scared and severely emotional.

My baby was the result of a hard journey through IVF and the very thought of any threat in my pregnancy resulting in anything other than our dram come true, was too much to bare.  I was a total mess.  My night that night in the hospital was full of hourly checks and observations and by morning I was told by my obstetrician than I wasn't to return to work, as I was still borderline pre-eclampsia, but I was fine to head home on bed rest.

I spent the next 4 days sitting on the couch taking it easy, but on Friday night I began to feel off - a little nauseous and that headache was back. I didn’t know whether to think too much into it or whether to go to the hospital. After an hour wondering I decided to at least call the hospital. After telling them how I was feeling they advised me to come in. So off we went to the hospital and I was hooked up to a machine to see how the baby was going. He was doing well, but I was not. The doctor told my husband and I that my liver and kidneys were showing signs of being in distress and whilst it wasn’t an absolute emergency that night, I was to stay in hospital. I thought I was living a nightmare. I was so scared for my baby and the thought of him being born early was too much for me to cope with. I was an emotional wreck.

The next three days were a routine of hourly checks and lots of blood tests. By Monday morning my obstetrician wasn’t willing to hold off any longer and I was to have a caesarean that morning, as my condition had worsened. Again with the freaking out.

The nurses were so supportive. I was taken down to the Neonatal Unit to see where my baby would go when he was born. It was weirdly comforting and intense all at the same time. The nurses talked me through what some of the machines were and what role they would play for my baby. 

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My son was born 3 hours later at 33 weeks and 4 days. He came out crying and weed everywhere, so I was able to hold him before he was taken away. It was this moment I hadn’t wanted to miss out, of all the moments you get when having a baby. I was so amazingly happy and so in love. 

We spent 3 weeks in NICU before my son was able to come home. The nurses and doctors in our nursery were absolutely amazing. I was allowed to be my sons mother. Even though changing a baby with cords is difficult, it was amazing. The day we were told we could take him home, I panicked. We were in this safe little bubble in the nursery and it just seemed so scary that suddenly I really would be totally in charge. 

My son is now 14 months old. He’s endured two surgeries in his short life, but he is healthy, happy and totally adorable. When we think back to our time in the nursery, we just remember how lucky we were that all our little man had to do was grow a little. For some this isn’t the case. The experience has made us more aware of what others sometimes have to go through, and how lucky we are. Every day with our son is amazing.


We welcome you to share your story with us.  Please e-mail your story along with a few pictures to admin@tinysparkswa.org.au with 'Family Story' in the subject.

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Alexander

For Lance and his wife Sonia, Alexander's early arrival was a total shock!  Having watched his son fight for life in the neonatal unit Lance was inspired to make a difference and is currently training for White Collar Boxing Fight Night #11 being held at the Perth Convention and Exhibition Centre on June 15.  Tiny Sparks WA are directly benefiting from this event and we encourage everyone to come and cheer on Lance, and all of the other fighters.  You can buy your ticket here.  

Alexander's story as written by Mum Sonia is below.

The early arrival of Alexander

We were having a most uneventful pregnancy. When I was 28 weeks pregnant, one Sunday I started having some tummy pains, thinking I’d eaten something unfortunate. They continued on the Monday and I left work thinking, ‘that is a bit weird, I’ll call the hospital on the way home’. That was a Monday afternoon and I didn’t go back for 6 months.

The midwive’s view was I might have an ‘irritable uterus’ (!), to go home, drink some water and have a lie down and call her back if they got worse. By 9pm that night, I had a gut feeling something was up and I had Lance take me to hospital. In amongst some serious eye rolling and lack of interest among the midwives (you could just here them thinking ‘first time mum overreacting’). Until they put me on the machine to see what’s going on and their faces changed quite abruptly with a ‘I’m going to go and phone your Dr’. When he appeared 10 minutes later, we knew something was up. Although I was contracting, I wasn’t dilating. A leisurely ambulance ride to KEMH, a very late night for us all and quite a few pills and jabs, I was settled in KEMH where I stayed until the following Friday, the contractions having settled down quite a bit. I’m not sure whether the staff were hopeful, or whether they had a feeling of what was going to happen, or whether we were just incredibly naïve, but we didn’t get a real sense of the traumatic events which were about to unfold. 

The contractions came back mildly on the Saturday and we had another trip to KEMH that Saturday afternoon only to be discharged again as I wasn’t dilating and the contractions didn’t seem to be getting worse. They continued to tell us we weren’t in actual labour and not to worry. 

I had a quiet day on the Sunday, only really getting off the couch to pot out some new plants I’d bought and then my thoughtful husband, trying to distract me from the increasing cramps and anxiety, thought a walk around the block would assist! After all, we weren’t ‘in labour’… I didn’t go very far and was pretty exhausted so we went home. Needless to say, the contractions started to increase but again, having to be told we weren’t ‘in labour’, we didn’t rush off to hospital. Instead I cooked perhaps the best salmon dish I’ve ever cooked (and subsequently lost the recipe). A couple of hours later about 9pm, the pains were just too much and I told Lance to take me to the hospital. Between leaving our house and the 10 minute drive to hospital, the labour pains became intense to say the least. Poor Lance was having to try and keep me calm and drive as quick as he could – it was like a scene from a movie! 

When we got to the hospital the poor orderly didn’t know what to make of this screaming banshee woman, and rushed me up to the maternity ward. By this time the contractions were almost constant. Needless to say, all hell broke loose as this maternity ward was definitely not used to 29 week pregnant women presenting in full labour. Our incredible doctor turned up in minutes and calmed the scenario but with a ‘you are 10cm dilated, this baby is arriving tonight’. Not the words you want to hear. 

This time I got a very, very quick ambulance ride over to KEMH with midwife in tow and the last thing the Dr saying before he closed the doors was ‘try not to push’. Lance tried to follow them but said he lost them when they were going over 120km/hr through the tunnel and through red lights. 

When we got there we had an army of doctors and nurses waiting, each trying to explain what was about to happen and what they were going to do with the baby once he arrived etc. I was still contracting and really not in a great space, so poor Lance was having to deal with difficult questions and explanations. 

Once I’d had an epidural, I seemed to become human again, and they recapped what they’d gone through. It was a very, very sobering experience, to be told your baby ‘should’ be ok, but they are going to have to put him on a ventilator as soon as he comes out and take him straight to intensive care. 

When you see babies being born on TV, they come out a bit purple and usually screaming. We got a very small, not moving, silent baby, who was quickly whisked off to the trolley with us wondering whether he was even alive. A tiny squeak reassured us he was and Lance smiling and saying ‘it’s a boy’! A team of doctors and nurses surrounded him and escorted him, with Lance, up to the NICU, where I wouldn’t see him again for what felt like an eternity, but was only about 3 hours. 

Despite the nurses telling me to get some rest (you get some rest after that!), one nurse took pity on me and wheeled me down to the NICU about 6am, after a strict hand washing, to see my tiny baby boy covered in cling wrap – and tied up to all these wires seemingly powered by this giant machine and beeps and noises everywhere. Alexander also had an incredibly bruised face – he looked like he’d gone 6 rounds with Rocky – as he had been a face presentation because of his small head size and the forceps had injured his left eye a little. This is not what you expect to be greeted with when you deliver a baby. 

Having been sent home with instructions also to rest (yeah right), Lance was also back at Alexander’s side minutes after I’d got there, and we could finally meet our son together. I think we were still in shock and it was hard to comprehend everything the nurses were telling us. But we took comfort in knowing he was stable and he was a good weight at 1.3kg (3 pound) for a baby born at 29+3 weeks. 

That gestation – “29+3 weeks” becomes tattooed to your brain and it almost becomes a label for you and your baby to wear while in ‘hospital land’. 

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The following days and weeks almost blur in together but consisted of trying to get into a bit of a routine of drop Lance at work – head to hospital – sit beside crib – pump every 3 hours – more sit beside crib – short break at the cafeteria for lunch – more sit beside crib – more pumping – more sit beside crib – pick Lance up from work – find something for dinner – head back to hospital together for a few hours – home – more pumping every 3 hours. Repeat. Every day felt like 100 years. Every beep in the room made your heart stop until you realised it was someone else’s baby de-statting and you were grateful it wasn’t yours. You were so grateful to do Cares as it meant you got to actually touch your baby properly (even though you were too scared to move them in case they broke) and actually partially feel like you were being a mother. 

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Kangaroo cuddles were the highlight of each day. It was always a balance of which nurse was on duty as to how long the cuddle was. It was so incredibly frustrating and heart breaking not to be able to pick your baby up whenever you wanted to. We constantly had to fight with the nurses to hold onto our baby for a bit longer, with the nurses saying ‘his temperature will drop’ or ‘you can’t overstimulate him’. I got to the point that when I got there in the morning, I’d ask to have him for a cuddle and then I’d just hold onto him for as long as my bladder would last. Usually I managed a couple of hours, with a few dirty looks from nurses when I refused to give him back, and a few notes written up in my book so I’m told! Keeping in mind he was always stable and he wasn’t sick – just small, so my heart told me  he was better on me than in a crib. When he was with me his temperature was always more stable, never had a de-stat and you could tell he was happier. I certainly was. I think it also helped get us through a lot quicker. That, and they had an influx of premmie babies in that November, so we were discharged back to our original hospital when Alexander was still 34 weeks gestation (4 weeks after being born), to ‘fatten up’ as the doctors said. 

When we arrived at our original hospital, the nurses weren’t very interested in us except as an extra hassle as then someone had to man the nursery 24/7! As a consequence, I could cuddle him, feed him, bathe him, any time I liked and there were no nurses there telling me what I could and couldn’t do. After asking permission to pick him up the head nurse actually said (and I’ll never forget her words) “He is your baby, do what you like”. I didn’t know whether to cry or hug her. 

Close family members were able to come and meet him and it was actually becoming real we had a proper baby. We hit the 2.5kg mark on Saturday, 10 December and at 35.5 weeks gestation we were allowed home. It was a 44 degree day and we were panicking that we were actually allowed to take this baby – now what we were going to do with him? 

We survived, but it was a tough road. We were still limited in where we could take him, who we could let cuddle him, so we still couldn’t be as free as other first time parents and that was tough. 

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We were so, so incredibly lucky though. Alexander just grew and grew, he eventually hit his milestones and continues to do so. We have managed to avoid any serious long lasting effects of him being born premature, and at 4.5 years old he is starting to overtake his friends in height and weight. He is very resilient, very smart and a kind and sensitive little boy, who is our super hero. 

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Harrison's Story

As a business owner, one of the greatest things you can do is share your success and I think great way to do that is to give back to the community. At Osinski Finance we have a very special link to a WA organisation known as Tiny Sparks WA. So, in honour of their work and to celebrate Father's Day 2017 we are running a 'promotion'. Terms & Conditions apply.

If you have a meeting with Osinski Finance from the 1st of August 2017 through to Father’s Day (3rd September 2017) and we can successfully get you a new loan we will donate up to $250 from our commission to Tiny Sparks WA when your loan settles. It doesn't matter if it takes us 2 weeks or 2 months to get the loan approved as long as your first meeting takes place in that period we will honour our commitment.

So why is Tiny Sparks WA so important to us? Well let me tell you a little story about how our son Harrison George Osinski came into this world;

Our Story started on the 27th January 2015, my wife Amy had been at a work dinner in the city that night and after some trouble getting home due to a number of bush fires in the area she finally made it home at 9pm and promptly went to bed complaining of a sore back but not thinking much of it.

The next morning, I awoke to find Amy not having slept all night due to her “back pain” coming and going in waves. I gave her a look to which she replied, “Don’t be silly, I’m only 29 weeks and this pain isn’t how labour is described in the books”. Being her first pregnancy and not knowing much we decided to call Rockingham Maternity ward for some advice on what she could take to relieve the pain.

The midwife on duty, whilst not concerned, suggested that we should come in for a check-up sometime that morning. So, we took our time, ate breakfast, watered the garden then headed to the hospital about an hour later.  Purely by coincidence when we arrived we ran into our obstetrician Dr Bouverie, who after enquiring why we were there, led us into an examination room and said a midwife would be with us shortly.

The midwife came in, attached the monitor to Amy, did a quick examination and said everything appeared to be fine. Just as the midwife was about to leave and confer with Dr B before letting us go home, Harrison’s heart rate disappeared from the monitor for a couple of seconds. This prompted her to suggest a more thorough examination, part way through this examination she excused herself to get a Dr to “have a look”.

At this stage, I can say we were both starting to worry. Next the Doctor on duty (who wasn’t Dr B) came in and examined Amy, again part way through his examination he excused himself to get Dr B to examine.

Dr B came in and after a quick examination informed us that we needed to get to King Edward asap because Harrison was on his way. The hospital staff sprang into action with our quiet little examination room becoming a hive of activity with 2 Doctors, 4 midwives and someone from administration putting in drip lines, giving Amy pills to take and organising an Ambulance.

Less than 10 minutes later Amy, a midwife (carrying a fishing tackle box which I though was weird thing to have, I later found out was an emergency delivery kit) and a paramedic were being loaded into the back of the Ambulance and I was getting into the front with the other paramedic. Next thing we are heading for King Edward under Priority 1 (full lights and sirens) up the Kwinana freeway in peak hour traffic.

Top marks to Jessie and Jackie from St John’s ambulance, not only did they manage to keep me calm during a stressful situation they made it from Rockingham Hospital to King Edward in Wednesday morning peak hour traffic in just over 40 minutes.

The next 3 to 4 hours were full of doctors, nurses and specialists trying to slow down Harrison’s arrival. It started out with trying to delay him 48 hours for the steroids Amy was given to strengthen his lungs, then it was 24 hours, then 12 and so on. Harrison was having none of it and at 12:56pm on the 28th January 2015 Harrison George Osinski was born weighing in at 1.455kg and 40cm long at 29 weeks and 6 days.

Lucky for us he was breathing on his own and that gave us a precious few minutes for a photo and quick cuddle from Mum before he was whipped off to the NICU with me in tow leaving Amy behind in the maternity ward.

I can safely say that arriving in the NICU with our son was one of the scariest moments of my life. Next came the doctors and nurses all working on getting Harrison hooked up to various monitors, drips, running various tests on him. Whilst I hovered around on the outer they worked at getting him settled into his new home and tried to reassure me that he was doing well.

From there our NICU journey started and at that time we had no idea how long we would be there, when the next time we could hold our son would be and if everything was going to be ok.

I think we were one of the lucky ones, Harrison was a fighter and there was no way he was going to put up with having to spend all his time in the humidicrib. Within hours Harrison was off the ventilator and on CPAP so he was breathing mostly on his own and CPAP was just there to help him along the way. This also meant that we were eligible for kangaroo care early on and both Amy and I took every opportunity to snuggle up with him as often as possible.

Life in the NICU in the early days was tough. You are basically a parent that must leave their newborn in the care of someone else. You have access to your child and you can stay as long as you like but at some point, you have to go home and trust someone else to look after the most precious thing in your life.  The first couple of days it was easier to leave because I knew Amy was still there recovering and I could head home at night knowing that she was only a couple of floors away.

Then came the day when Amy was discharged and we had to leave our little boy each night and it was hard. Don’t get me wrong, the nurses that provided round the clock care to Harrison were great, they kept us informed, they told us what each injection or supplement was for, what it was helping with, and what alarms/noises were normal. But it was still hard to leave him each night and travel the 45 minutes to an hour to our home in Baldivis and wonder if he was going to be ok there without us.

Again, I think we were some of the lucky ones, apart from being small (only 30 weeks in the oven will do that) Harrison was healthy and responding well. He was off the ventilator in a couple of hours and started putting on weight early on, at first it was a couple of grams but with the help of Amy expressing non-stop, every three hours like clockwork, he started putting on more and more. In the first week, a short bout of jaundice was all he really suffered and a day or so under the lights fixed that up no problems. Within a week he was off CPAP and could have his IV removed.

Before we knew it, Harrison was upgraded from the Special Care Nursery to another part of the NICU which meant that he shared a nurse with 1 or more other babies rather than having one to himself. It was at this stage that things became a little bit more difficult, life goes on, bills need to be paid so despite being given some time off work I needed to go back to work. My employer at the time was great, they gave me flexibility in my work schedule that allowed me to work from home early in the morning, miss the peak hour traffic, take Amy to the hospital and visit with Harrison for an hour or two, have a quick cuddle then head to the office for a couple of hours. Finish work in the afternoon head back to the hospital for some more time with Harrison before heading home in the evening again missing the afternoon traffic.

From there things only got better, Harrison was upgraded to different nurseries every couple of days to a week. Life in the NICU is all about the small wins, off CPAP, putting on weight, taking 5mls of milk and keeping it down and so on. On my birthday in February Harrison got his first bath from Mum and Dad and we were getting close to being able to take him home.

After what we were told was a short 5-week period he had reached the magical 2kg mark and passed all his tests so he was transferred down to Rockingham Maternity hospital on the 6th March 2015.                                                                                                                                               

Being out of King Edward NICU was great, not only did it cut down our commute to visit Harrison, meaning we could spend more time with him it also meant that all our friends and family could finally meet him in person to give him all the cuddles they had been hanging out to give him.

Less than 2 weeks later we had finally reached the day we have been waiting for, on the 18th March 2015, 1 month and 19 days after he was born Harrison was released from hospital and could come home.

Our journey through the NICU and prematurity was relatively short compared to some people and filled with lots of ups and not many downs. The same cannot be said about others journeys some families need a lot more support and have much longer journeys than ours and that is why organisations like Tiny Sparks WA are so important.

Organisations like Tiny Sparks WA not only provide a wealth of easy to understand information for families going through the NICU journey, they also provide real support to the parents of these children.

People always say having kids will change your life and for me Harrison coming into our lives the way he did certainly did. It opened my eyes to some great causes out there that need our support. Having recently started my own business, I now have a way to give back to an organisation that provides such a great service.

Nathan

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Grace's Story

Written by Mum Allyson.

Grace was my fifth pregnancy, having had one miscarriage at 12 weeks in between my first two children. I had three sons; 5 ½, nearly 3 and 15 months when Grace was born. My pregnancy had been difficult with regular bleeding and a hemorrhage at 18 weeks where I felt I had lost my baby but scans showed that I still had a fetus. 

Grace when she arrived at King Edward.

Grace when she arrived at King Edward.

I was on the last day of 23 weeks when I felt strong pains in the evening. I went up to the Albany Hospital and they gave me Ventolin to stop the labor. Initially I didn’t realise it was labor as I was induced with my boys. That seemed to settle so by 9am the next day when my husband, Richard, bought the boys to see me, everything seemed to be okay. By Midday my labor had progressed remarkably and I was being prepped to fly to King Edward as they thought the baby would be born soon. 

We were transferred to the awaiting Royal Flying Doctors airplane. The engines were going and Richard was being strapped in when my waters broke. The RFDS Midwife made a lifesaving call when she said I would be transferred by ambulance back to Albany Regional. It took them a very short time to get me back to the hospital when Grace was born encaul at 3pm on November 26 1997. She was just 24 weeks gestation and a very tiny little girl (585gms). The three doctors and one midwife decided to do everything they could to support her survival as they have since told me that she looked strong and healthy enough to try.

The hospital was not equipped for such a tiny infant and a friend has told me that all available staff were called to cut down tubes to help with her survival. There was no ventilator, so when they had successfully intubated her my GP spent just under six hours hand ventilating her. They called the Neonatal team who arrived by RFDS just before 9pm who stabilised her, which took quite a while and then flew her up to KEMH. I was told that up to 4 aircraft were involved in her birth and transfer. Regional families could not survive without the RFDS.

Grace spent 10 weeks on a ventilator and took two months to reach one kilogram. She was discharged after 4 ½ months from the nurseries at KEMH in April 1998.

This year she turns twenty and has done incredibly well. She graduated high school last year and is currently working at Bunnings for a Gap Year before she goes to Perth to study Social Work. Her plan is to work with the families of Pre-mature babies at King Edward or Princess Margaret.

I support Tiny Sparks WA and all the work they do because I have walked the journey of having a baby prematurely without support and being from the country it is even more isolating. I would have loved to have the nurture and encouragement that they offer to families when we were going through the difficulties that only those who have been through it can understand.


We welcome families sharing their stories on our blog.  If you would like to share your story please send approximately 500 words and a few photographs to admin@tinysparkswa.org.au with the subject 'Family Story'.

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