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Arthur

"Hi, I'm Anne, mother of Isabelle, Poppy and Arthur. Arthur was born in January 2009 with an antenatally diagnosed left sided diaphramatic hernia. He was unable to breathe when born and was put on a conventional ventilator and then transferred to the 'washing machine' ventilator before he made it back to the conventional ventilator on day 4 and was able to be operated on in day 5.

 

"After a failed extubation on day 7 he finally made it off the ventilator and onto CPAP on day 12 and got his first cuddle the next day. He officially was off CPAP by day 17 but in reality he didn't spend much time on it past the second day as he would constantly take it off.

 

"His tummy took longer to recover than his breathing and he didn't start feeds until day 15 and they weren't accepted until day 17 but it only took 4 days to get to full feeds and we were home on day 24 with Arthur being fully breastfed.  He did lose weight when he started breastfeeding, as he was just getting the hang of it, but once he got home he put on weight perfectly and you would never know anything had ever been wrong with him."

 

 

Phillips Triplets

Phillips Triplets - born 25 weeks and 3 days - April 2007

 

"Two girls and a boy - now 2 years and 4 months corrected age.  Our house is a happy and joyful one!

"All kids partially breast fed for between 9 - 14 months - it is possible.
One daughter - (740g) ventilated but soon onto CPAP, no infections, no brain bleeds and came home on her due date. Could recognise and count all the number 1-10 at 18 months corrected.

"Second daughter - (636g) grade 2 brain bleed, had a bad lung bleed (scary), some slight infections, moved between being ventilated and on CPAP but finally progressed and came home 3 weeks past due date on small amount of oxygen which she stopped requiring 4 months later.  Wears glasses for a small squint but is otherwise fine (just cheeky).

 

"Our son - (760g) was born without a full oesophagus 'TOF baby' which caused numerous complications and generally had a very rough ride indeed. Operation on day one and had 4 others whilst a neonate (fit gastrostomy, fix hernias etc). He nearly died at 6 weeks from a complication following the TOF repair (3 very rough days). Grade 4 brain bleed. Had infections but always recovered. Finally came home on oxygen 8 weeks post due date. He is still on oxygen whilst sleeping but probably won't need it soon.

 

"Brain bleed in motor areas and sight area so crawling, walking delayed but walked just before 2 years corrected and is progressing well. Eye wobble (Nystagmus) means he probably won't drive but most people don't realise he has any issues with his sight. He loves his books. PDA still open so was closed at Great Ormond street as a day patient. Most issues behind us now. Despite a very poor start to life indeed my son is a very happy normal boy who loves cars, balls and Thomas the tank engine."

 

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Harry

"Our Son Harry was born at 29 weeks, why we do not know and the question will always be open for us.  However looking back the journey was amazing and rewarding seeing how Harry has grown into now a 9 month full of beans baby boy who now weighs a mighty 23lb.  Harry has recently started at a Nursery close to were we live and loves it!  He is such a determined little boy.

 

 

"Would love to chat and help with support for other Mums and Dads who are experiencing premature birth of their precious baby and the experiences and emotions in which, as parents, we go through and emotions that probably we have never experienced before whilst we travel through this challenging journey."

 

Samuel Chatfield

"Our son Samuel was born at 26 weeks gestation exactly. Samuel spent the first five weeks of his life at the NICU in Addenbrooke’s Hospital. Dot was a patient for just over a week and then discharged.

 

"After five weeks Samuel was moved (rather rapidly!) to Hinchingbrooke Hospital as the NICU at Addenbrooke’s were desperate for space.  This was far from ideal for us given that we live just north of Cambridge.  However it all turned out well. Samuel did very well and thrived and was discharged at 36 weeks fully breastfed.

 

"Those ten weeks were difficult beyond description as Samuel battled with high bilirubin levels, infections, weaning from CPAP amongst other things.  He is now 17months old.  One of the two holes in his heart has closed and he is being monitored carefully by the cardiologist.  He has recently had a bit of physio which has made tremendous difference and he crawled for the first time last week."

 

> Acute Neonatal Transfer Service

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Shane

"Shane Lee Riley was born at 28 weeks weighing 2 pound 8 ounces.  He was at Colchester for 3 weeks he was not tolerating his food at all, he had infection after infection he also had blood transfusions, breathing problems and was on numerous medication he lost weight and went under 2 pound he was a very sick little boy.

 

"On the 3rd week at Colchester, Shane had a terrible infection which caused him to stop breathing, they got him stable and an x-ray showed that there were gases leaking from his intestines which then caused concern that Shane had NEC, he was then immediately transferred to Addenbrookes where they treated him for NEC by nil by mouth and 10 days of antibiotics.  That solved the problem and they then had to reintroduce food which took a while but eventually Shane turned a corner and was digesting his food well.  Shane was eventually allowed back to Colchester for an extra 3 weeks before he was allowed to come home.

 

"This experience was the worse pain we could ever have imagined, it was an emotional rollercoaster we never knew from one minute to the next if Shane was going to be ok.  We would have good days and bad days but we had full support from all the staff.  We asked the same questions over and over again, there is so much to take in and to try and understand we also met a lot of other parents who were going through the same emotions as us, we all supported each other.  No one knows what the pain and heartache is unless you go through it.  We have made some wonderful friends who we will stay in contact with forever as we have a special bond with them.

 

"Shane is now 4 months old and weighs 7 pound he is on a lot of medication but he’s a little fighter and our little miracle."

 

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Eoin

"Parents of Eoin Bailey, born at 26 weeks at Addenbrookes and then transferred out to Harlow at 7 weeks of age. Spent a total of 3 months in hospital. Our main issues were around the transfer but also outpatient care spread across the different hospitals. 

 

"Eoin is now 2 years old and is doing well, with only the respiratory consultant still seeing him. Along the way he encountered many of the things preemies are expected to get, in addition to meningitis, coming home with canulas in both hands, a zinc deficiency and readmission at Christmas with bronchiolitis. He was breast-fed throughout."

 

> Acute Neonatal Transfer Service

 

 

Sebastian

Sebastian Ramos was born by emergency Caesarean section after his mother Jenni came in for a scan due to reduced fetal movement. At birth Sebastian had to be resuscitated and transfused for half an hour. It was discovered that he had lost over half his blood to Jenni, was dangerously anaemic and his body was shutting down due to lack of oxygen. There was a build up of liquid around his heart that suggested he had been struggling for a couple of days. 

 

Sebastian spent 3 weeks in hospital. Initially there were fears for his livers and kidney which had shut down due to the trauma but these organs eventually started to work. 

 

Sebastian is currently breastfeeding normally (having been on a naso-gastric tube for the first month), gaining weight and behaving like a normal baby. It is difficult to know what damage has been done to his brain from being starved of oxygen and we do not know what kind of disability or difficulties he may have in future but the indications so far are that Sebastian is a survivor.

 

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Samuel

"Our son Samuel was born at 26 weeks gestation at Addenbrooke’s Hospital in Cambridge (a level three unit) and that is where he remained for five and a half weeks.

 

"I remember all to well the telephone call we received early one morning to tell us that our son Samuel was being moved to Hinchingbrooke Hospital (a level two unit) later that morning. The neonatal unit at Addenbrooke’s was full and there was a desperate need for an intensive care cot for another baby who was very poorly. The thought of Samuel being moved and transferred in an ambulance to another hospital filled me with utter horror. We were comfortable at Addenbrooke’s and we had got to know the staff there too.

 

"The move went ahead and Samuel was safely taken to Hinchingbrooke hospital where we remained until he was discharged four and a half weeks later. I’m not going to deny that having to move was very upsetting and having to get used to a new unit, new routine and different staff members was stressful. Also the change in the intensity of care from a level 3 to a level 2 unit took quite a bit of adjustment. However, my level headed husband kept reminding me that Samuel would not have been transferred if he wasn’t stable and well enough and I firmly believe that too.

 

"Looking back this was a hugely positive step in the right direction and a move towards bringing about normality for us and Samuel in preparation for going home. When we arrived at Hinchingbrooke it transpired that the baby needing Samuel’s space had been born there and much as I wanted to stay at Addenbrooke’s seeing that tiny little baby made me realise that it’s need was far greater than Samuel’s and it required the excellent care Samuel had received in the very early stages of life."

 

> Acute Neonatal Transfer Service

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Daisy

"Daisy was 2 weeks overdue and suffered from MAS – Meconium Aspiration Syndrome. It was explained to me that this meant that she had inhaled some meconium (sterile poo as I understood it) during labour. I was told that often babies become distressed during labour and can pass meconium and swallow it; in Daisy’s case she was so distressed that she began to breath heavily and as a result inhaled a mixture of meconium and amniotic fluid, which passed into her lung."

 

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France

Read Cheryl and Steve’s story following the arrival of their baby girl at 32 weeks following admission due to pre-eclampsia and photos that accompany Cheryl and Steve’s story during and following the arrival of their baby girl, along with their stay within Neonatal Services

 

 

 

 

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Aiden

Follow the birth of Aiden and his journey through the Neonatal Services. Aiden was born early at 30 weeks gestation because of placental insufficiency resulting in poor growth.

 

 

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Breastfeeding stories

Establishing breastfeeding with the preterm infant - one mother's story

 

 

 

Preterm triplets - one mother's account of successfully establishing breastfeeding.

 

 

 

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