Here is our brave warrior Roman and his CDH story. A boy with a right sided diaphragmatic hernia with a type C defect and 11% chance of survival.
We found out that our baby had CDH at 35 weeks (December 2022). We had gone to visit a birthing centre as this was where we were expecting to deliver. Thankfully the midwife measured bump and said bump had dropped off the scale, so she sent us for a growth scan. On Monday 19th December we went for the scan and were told they’d be in contact. We received a phone call to inform us that something wasn’t quite right and that they think our unborn baby has a hernia, that he will need an operation once he’s born, and that they may want to deliver baby early. In pure panic, we went and brought preemie clothes to be prepared.
The following day we had a follow up scan which started very positive and looking ‘normal’ but ended with seeing the abnormality RCDH (right sided congenital diaphragmatic hernia). We had never heard of CDH before, so we had a lot thrown at us at once and it was so hard to understand it all. At Medway they did a scan and confirmed to us that the baby’s head to lung ration was 90%. So, we had the amniocentesis the same day to see if our baby had any other abnormalities. This all came back clear. Big relief! We then had to go and see our parents and inform them of our unborn baby’s condition which was heart breaking, especially when it was the first grandchild on both sides.
We then were referred to the Harris Birthright Centre and King College Hospital as they deal with CDH. This was about 1 hour and a half drive away from our home. This is where I then had to go to for all my appointments. Our first appointment there was Thursday 22nd December. I was seen three times in less than a month. We had a few different scans at the Harris Birthright Centre where they were unable to get very accurate imaging due to such a late diagnosis, so it was a very unknown situation of how severe our baby was and what the head to lung ratio was.
Next stage was to be induced at 38-39 weeks, but we would need to wait for a NICU bed to become free for our baby first. So, we went in on Friday 13th January to be induced, baby did not want to come so on Monday 16th January I opted for a caesarean section and Roman was born on Tuesday 17th January 2023 at 12:13pm where there were neonatal doctors, consultants, and nurses in the operating room ready for his arrival. He weighed 3oz/ 6lb 6oz. He was intubated and whisked away to the NICU.
Roman’s dad tried to go and see him around 3pm and was told they were busy trying to get lines into him and they’d call once they had finished. At 10pm that night we still hadn’t had a phone call, so we just went up to see Roman. We got to see our boy and he looked so poorly and vulnerable. Nothing prepared us for the way he looked. We both struggled emotionally with this, but my mother’s instinct said ‘he’ll be ok, he’s got this’. I don’t know how I could say that, maybe I believed this or was just trying to convince myself.
The next day Wednesday 18th January the consultant had chat with us, they were struggling to oxygenate Roman, and she had referred him to be assessed to see if he was a candidate for ECMO at Great Ormond Street Hospital, and that the hospital would do everything they could to keep him alive until they arrive. The CATs team (Children’s Acute Transport Service) arrived and assessed Roman. They told us they’d be taking him and that we could go in the ambulance with him which was a relief as I wasn’t sure I’d be allowed a day after a c-section (unsure of if he’ll even survive the journey) so I Roman’s mum went to discharge myself and Roman’s Dad went to pack all our belongings into the car. From the minute we got outside of the hospital, Roman started saturating better. We were blue lighted and arrived at GOSH within 37 minutes and taken to CICU (cardiac intensive care unit) where Roman was assessed over a few days to see if he needed ECMO. As everyday went past, he became less likely to need it.
On Saturday 21st January, Roman was moved to the NICU at GOSH. From this day to day 19, Roman was up and down. He had infections, a pneumothorax, multiple pulmonary hypertension crisis’ and there were times we didn’t think he’d pull through.
On Monday 6th February, Roman was strong enough for his repair surgery. He went down at 1pm and we got a call at 18:47 to inform us that the NICU had the call to go and collect him from theatre. The surgeon then called to update us to tell us everything went well, they did it laparoscopy (keyhole) and that he’d speak to us in person over the next couple of days. Roman had a type C defect with 50-57% of his diaphragm missing with his right lobe of liver, right kidney and both collapsed small and large bowel occupying the entire right hemithorax. We rushed over to see Roman and were warned he may go downhill temporarily after surgery, but he didn’t. His tummy looked like it was about to burst, with all the co2 they’d pumped into him during surgery. They aren’t lying when they say intensive care is a rollercoaster, it is. We had many ups and down, still suffering with pulmonary hypertension but we were able to wean the pressures and his oxygen. Roman got to go outside the NICU to the Japanese Garden. This was his first experience off the ward and in the fresh air.
Breathing support:
Intubated from Tuesday 17th January until Monday 20th March. Roman was then extubated for the first time. He had 20 hours on high flow on 22% oxygen and then went onto BiPAP as he was struggling. They had to keep him sedated for 48 hours as he wasn’t tolerating it. He was then de-escalated to CPAP. His settings were weaned, we moved to high flow in the day and CPAP of a night and then finally onto high flow full time, down to nasal canula and then off all breathing support from Sunday 7th May.
Feeding:
Roman had the go ahead from SALT to explore a bottle. Thursday 13th April was his first experience. He took 1ml the first time, 3ml the second, 10ml the third, 37ml the fourth time and then the fifth time he took 57ml and the sixth time a full bottle of 97ml. We slowly increased the amount of bottle feeds he was allowed and then moved him over to just bottle feeds, only medications given via the NG. Roman has three meals, snacks and two to three bottles of milk a day.
Medication and withdrawal:
Roman was on lots of medication, quadruple inotropes, fentanyl, morphine, clonidine, sildenafil, omeprazole, and lots of other medications. Chloral was used a lot to help Roman relax and sleep when withdrawing. Withdrawal was on of the hardest parts of the journey. Due to Roman being intubated for so long he had to be sedated which meant he got addicted to these medications. When weaning the medication, we sometimes had to go back up and we were in a vicious cycle. Some days we had to keep him comfortable using other forms of medication to be able to wean the medications. We got through it, thankfully!
Local hospital and transferring hospital:
Our local hospital and Kings didn’t have a bed for Roman when he was stable and ready to be transferred for lower-level care. One of the issues was the IV clonidine that nowhere would take. Thankfully for us, we got to stay until Roman was ready to go home. We planned with the consultants, surgeons, and sister nurse to get the ball in motion for Roman to be discharged from the NICU at GOSH which they don’t usually do but we were keeping Roman in hospital waiting for a bed at the local when he didn’t need to be. We got to room in with Roman from Sunday 14th May to Thursday 18th May when we were finally discharged. We were supposed to leave earlier in the week, but the second routine vaccines made Roman poorly.
Coming home:
It was daunting coming home especially after being in intensive care and not being on a ward where there isn’t 24-hour monitoring. The hospital did leave us to it and took all the sats monitors off when we roomed in so we could get used to it. We were able to take him off of the premises which was nice. We thought we may need an oximeter, but we haven’t needed one. Within a week of coming home, the NG was out, and everything was oral. Roman slept through the night and was enjoying his time at home. He instantly became a happier baby.
Weight:
Roman left hospital underweight and not on the centile line but was gaining weight. We had to put an additional scoop of formula into his milk to help with his weight gain. Since he has begun eating solids, it’s really helped with his weight gain. We are currently on the 33rd centile.
Now:
Roman is now 13 months old, meeting all his milestones. He’s crawling, pulling himself up, standing up and walking. He has a few words that he says regularly e.g. mum, mumma, dad, daddy, nan, na, Ro and baby.
He’s been on UK holidays as well as holidays abroad, has weekly swimming lessons, has a new fur puppy as well as his African Grey Parrot who constantly asks ‘where’s Roman, where’s Ro Ro.’
Roman is due to have surgery in May for his inguinal hernia and an undescended testicle.
Date Of Birth: 2023-01-17
