Sebastien Ulehla’s Story
Boris and I were thrilled when we discovered I was pregnant at Easter and our long waited for baby was due Christmas 2007. Being first time older parents who had experienced two miscarriages, we were told all the doom and gloom stories about conceiving and carrying to full term. So it was exasperating to go two weeks over with a continually growing baby! I was induced and he still didn’t want to come out. An emergency caesarean finally delivered a healthy 9lb 3oz baby boy on Friday 5th January 2007, one day before Boris’s birthday and two days before Ukrainian Christmas.
Breastfeeding was established and even though he wasn’t a great feeder he regained his birth weight and we were home within a week. Boris and I were at his second week check up with the local health nurse and she commented Sebastien had lost a bit of weight, despite 2 hourly breastfeeds. Nurse Helen seemed to be taking a bit of time looking over him and when the stethoscope came out I could feel a rising panic. She asked if we had a local GP as she felt his breathing wasn’t right. She couldn’t give us a direct answer as to what she thought was wrong. I knew I couldn’t get in to see my regular GP at short notice so we went to the local Medical Centre and the doctor there tried calling a paediatrician. Sitting back in her chair she said, ‘You know what, it’s 4:00pm on a Friday they’ll all be on the golf course. I suggest you go straight to the Royal Children’s Hospital. I’ll phone ahead and let them know you’re coming.’ She wasn’t able to tell us what was wrong either.
We drove in dread and silence to the Royal Children’s Hospital.
Boris dropped me off at the entrance while he went to park the car. I didn’t even know where Emergency was. After getting directions I fronted up to the Triage nurse and burst into tears saying I didn’t even know why I was here but was told to bring Sebastien in. God bless that nurse who came around the desk to take Sebastien and tried to reassure me. Boris and I were ushered straight into a cubicle. I knew then something must be wrong otherwise we would have had to wait like everyone else in reception. Sebastien then went through numerous blood tests, ECGs, a horrible x-ray where Boris had to sit Sebastien on a stool and hold his arms above his head. I stood behind the protective barrier crying. Still no-one could tell us what they thought was wrong. We were then taken into another room where Sebastien was undressed completely to undergo more tests. I was beside myself. I couldn’t stand watching what was happening to him. I wanted to pick him up and run out of the hospital. The nurses were trying to extract a urine sample via a needle straight into his bladder. He was already so dehydrated they couldn’t get anything. He was so distressed they gave him a dummy. Something we’d avoided up until now! Boris was fantastic. He didn’t leave his side and kept reassuring Sebastien throughout his ordeal.
Penny, a social worker came and found me and suggested I go and express my milk. I’m sure it was just a ruse to get me away from the distressing situation. I felt like a zombie going through the mechanical motions of expressing what amounted to a dribble of milk.
It was after midnight when a diagnosis was explained by Dr Bryn Jones and other members of the Cardiac team via a hand drawing. Sebastien had a Hemi-truncus – the right pulmonary artery originates directly from the ascending aorta. The affected pulmonary artery is at high pressure. The other pulmonary artery is also affected and is exposed to higher than normal pressure also, as the blood flowing through the right side of the heart is all directed into that lung, rather than flowing equally to both lungs (as per Prof. Jim Wilkinson). We then met Professor Wilkinson. Professor Wilkinson explained Sebastien’s case was quite rare. He’d have seen a Hemi-truncus once in 10 years. Having said that, surgery was available and the outcome in such cases was good. Sebastien was admitted that night to the Cardiac Ward.
It was about 1.30am and I was thinking this is a nightmare. I was only just getting used to the idea I was a new mum, let alone that my two week old son was due to have open heart surgery in a few days. I had to go and find the nurse to ask for maternity pads. Nurse Anna gave me a breast shield and showed me where I could express and store my milk. Boris had gone home and would return the next morning with clothes and toiletries for me. As I was breastfeeding an infant, accommodation would be found for me at the hospital.
My leaking breasts woke me up the next morning. I hadn’t been able to feed Sebastien for 20 hours. It broke my heart every time he woke in the night looking for a feed. He was given sugary water to keep him going. After a few more tests and an ultrasound to confirm his diagnosis I was able to feed him. He fed for 20 minutes and promptly fell asleep.
Boris had spoken to his family before coming back into hospital the next morning. I called my sister and when she answered I just couldn’t speak. Boris told her the news. The family all wanted to do something. I said cook for us. It gave the family something to do besides worry. Thank god for their nutritious food and my mother-in-law’s juices. My sister-in-law Ines asked if she could bring in anything for me. I said bring in something for me to write in. I kept a diary of the 3 weeks we spent in hospital and I’m so glad I did. It was and has been therapeutic.
During this time I was still receiving congratulatory calls from friends about Sebastien’s birth. I could only speak to a few very close friends and family, so each night Boris would go home with a list of people to call to explain why I hadn’t phoned back. We had wonderful support from our past parish priest Fr Terry Kean and our new parish priest Fr John Petrulis. Fr John had only been in the parish for a couple of weeks before hearing our news and not only made time to visit Sebastien but informed our community of much needed prayers for Sebastien.
I returned every two hours from Sebastien’s bed to express my milk. That room was both a sanctuary and a hell hole. I would make phone calls while hooked up to the breast pump or sometimes I would just sit there and cry helplessly. I picked up a magazine only to find a story about a heart kid. These were exactly the kind of articles I’d seen before only I’d glance at them and think, gosh how awful for the parents, before skipping to the fashion pages. Now I was living one of those articles and I felt so alone despite Boris and all the wonderful help from the hospital and family and friends.
We had Sebastien baptised by an inter-denomination Minister at the hospital. One of the nurses found a digital camera for us to use. He even had a christening gown given to him! Surgery was set for Thursday 25 January.
I was given a room at the hospital and a routine of feeding, expressing, tests, going for a coffee or a walk developed over the week. Overnight the nurses would call me to come over and feed Sebastien, then I’d go off and express. I’m sure I made that walk from 5th floor accommodation to the cardiac ward and back again while asleep!
There were times when Sebastien really looked unwell and I dreaded and welcomed his surgery. We were devastated when it was delayed for a week after he developed a temperature. It was Wednesday 24 January – my 42nd birthday. Throughout the whole ordeal Boris and I would lift each other’s spirits, but this day was the worst day. We were both so flat after hearing the news. Mum and my sister had come in with birthday presents and a cake for me. I declared it my “Unhappy birthday”. That day also announced another round of birthday phone calls from other people who didn’t know about Sebastien’s surgery! More phone calls I couldn’t deal with.
By this time I was unable to keep feeding Sebastien due to his breathlessness and tiredness as surgery approached. I kept expressing and he was fed through his nasal tube which had been inserted since day one. I expressed like a mad woman, determined to do something, anything that would aid his recovery.
Surgery was reset for Wednesday 31 January. Numerous tests were to be performed prior to surgery including the dreaded urine test. We didn’t want to see Sebastien go through the needle into the bladder method again so Boris volunteered to hold a cup to catch some urine. The nurses warned him he could be standing there for a long time! Sebastien dutifully peed into the cup within a minute! The next urine test a few days later would see Boris standing for more than 45 minutes, cup in hand, ready to catch a few drops of urine. I went off to express (again!) only to return half an hour later to see Boris in the same position, steadfastly holding the still empty cup. About 10 minutes later Sebastien yielded enough for his tests. My heart burst with love for Boris doing such a noble gesture for his son.
Sebastien’s surgeon, Dr Yves d’Udekem explained the surgery and that Sebastien would be on bypass. I remember looking at Yves’ long fingers. How was he to fit those hands into the tiny chest of Sebastien! The things that go through your mind! Interestingly, one of Yves’ daughters goes to ballet class with one of Boris’s nieces. We may have met Yves under much different circumstances than those facing us now!
On the day of surgery, Sebastien’s last feed was to be 3.00am that morning. I had decided to let him sleep uninterrupted by bottle feeds throughout the night and to have feeds via his tube. I’m so glad I did. He looked well rested, bright eyed and alert – ready to face probably the biggest challenge of his life, open heart surgery.
Sebastien with Mum & Dad on the morning before surgery – 31 January 2007
Being the youngest on that day’s theatre list Sebastien went first. Boris and I hugged each other as he was wheeled off, sucking away on his dummy as if he hadn’t a care in the world. He was showing more emotional strength than we were!
We were advised to leave the hospital on the day of surgery as waiting around never helped anyone. We went out for breakfast and then for a trip to the zoo. I remember feeling quite relaxed. Well, there was nothing we could do anyway! We were standing at the Meerkats when Yves called to say surgery was over and Sebastien was on his way to Intensive Care. We could see him in an hour’s time and everything looked fine. We cried and hugged each other in the middle of the zoo.
Seeing Sebastien for the first time was difficult. There wasn’t much to see as he had so many tubes and bandages covering him, and his arms in legs splints to stop him knocking out any tubes or wires. He looked so pale and still. It was difficult to know how he would come out from the anaesthetic. It could be slow and steady or he could come out thrashing and upset. As it turned out he started little movements that night and by the next morning was awake but was still looking miserable even if he didn’t have the energy to express it! We were allowed a cuddle each. I was scared I’d accidentally pull out one of his tubes. He was ravenous but on limited fluids. He started off on 5mls of breast milk via a syringe. After a day the 5mls went into a bottle which he consumed in one suck! He managed to get through my expressed milk in record time and I couldn’t keep up with demand! After 1½ days in the ICU we went back to the cardiac ward.
Sebastien in ICU after surgery – 31 January 2007
Through the dedicated help of Jenny McClelland, Sue Smith and Nurse Jill we both re-learnt how to breastfeed. At first he didn’t seem interested but hunger gave out and we soon got back into rhythm. Recovery was up and down and weight gain was slow. I was desperate to get back home amongst familiar surroundings and routines. Going home hinged on sufficient weight gain. Thank god for his reasonable birth weight. He needed every extra gram to aid in his recovery. Finally a date was set and his weight was deemed appropriate. We were on our way home!
Sebastien was scheduled for weekly weigh-ins with the health nurse. I was supplementing my breastfeeding with Polyjoule, a carbohydrate based liquid I had to syringe into his mouth. It was messy and sticky but he seemed to enjoy it. I phoned his weight into the dietician every week. He was also on three different medicines I had to measure out and administer. I went over it three times with the pharmacist in hospital. Were they sure I could be trusted to get this right???
Thankfully he was off his medication within a couple of months and the polyjoule was phased out with sufficient weight gain. When I look back on photos of his recovery I could see just how thin he really was. He would still get tired breastfeeding and once solids were introduced at 6 months there was no holding him back!
Sebastien – 18 months old – June 2008
Now approaching 19 months he’s much like any other toddler the same age. His chest scar is almost non existent. I mentioned to Boris when a few of the babies in Mother’s Group were up standing on their own at an early age and some were a good month younger than Sebastien and Boris reminded me Sebastien had spent a month in hospital having had heart surgery!
I do forget about his surgery from time to time, but I never forget the care, skill and dedication of every member of staff we came across at the Royal Children’s Hospital. I gave to the Good Friday Appeal for the first time last year and encouraged friends and family to do the same if they didn’t already have a charity or organisation they give to.
Sebastien is on yearly check ups and may need further surgery when he’s older but so far all seems to be well.
I’d be interested to speak with anyone who has a child with a hemi-truncus and can be contacted via Email:
Written by Lynda – Sebastien’s Mum – June 2008