Premature babies are at risk of an eye disease called Retinopathy of Prematurity (ROP), which may, in serious cases lead to blindness. This is why premature babies should be regularly screened in line with the 2008 National Guidelines.
In most cases, even if a baby does develop ROP, it will resolve spontaneously and treatment will not be needed. For a small number of babies, ROP worsens, often very rapidly, but with timely treatment the prognosis is good.
This article will look at:
- What is retinopathy of prematurity?
- Retinopathy of prematurity medical negligence claims
- What are the risk factors for ROP?
- How do I know if my baby has ROP?
- If my baby has ROP, what treatment will he or she need?
- I am worried about the care my baby is receiving – what should I do?
- Retinopathy of prematurity: Case studies
Retinopathy of prematurity (ROP), also called retrolental fibroplasia (RLF) and Terry syndrome is where the blood supply to the retina does not develop normally as a consequence of being born prematurely. The retina is the layer of tissue that lines the back of the eye and makes it possible to see.
Your baby’s eyes begin to develop around the 16th week of pregnancy. If he or she is born very early, this process is cut short. The blood vessels in the inner retina do not develop a blood supply until much later in the pregnancy and this process does not complete until the end of the pregnancy. Therefore, if your baby is born prematurely, the inner retina has an incomplete blood supply. The more premature the birth, the less complete the blood supply present.
In most cases, the premature baby’s eyes will develop normally. However, in some cases, the blood vessels in the inner retina do not grow normally. They may grow into other parts of the eye such as the clear gel that fills the space between the lens and the retina of the eyeball and cause bleeding/leaking. The vessels may also change physically, to pull the retina, and, if extensive enough, cause the whole retina to detach from the eye.
Over time, these blood vessels and the associated scar tissue can cause other serious vision problems, such as:
- Crossed eyes (strabismus)
- Increased eye pressure (glaucoma)
- "Lazy eye" (amblyopia)
- Near-sightedness (myopia)
The good news is that with early diagnosis and treatment, most babies will retain a normal structural eye, with good vision.
Sadly, ROP occasionally gets missed and by the time it is detected, the baby has suffered permanent visual loss. Janine Collier, Head of the Medical Negligence team at Tees, has specific expertise in helping families whose child has suffered permanent visual impairment because of a failure to detect and treat ROP. If your baby has suffered visual loss as a result of late diagnosis you may be eligible for compensation. Read on to find out more about this condition or click below to speak to a specialist solicitor.
The risks increase with increased prematurity and the smaller your baby is at birth, the greater the chance of her or him having ROP. There are other factors which contribute to the risk including:
- Bronchopulmonary dysplasia
- Chronic lung disease
- Other inter-current illnesses such as infections, cardiovascular instability
- Poor post-natal weight gain
All infants who are at risk for it should be screened in line with the 2008 National Guidelines. The timing of the first screening examination will depend on your baby’s gestational age at birth.
The baby is given eye drops to make her or his pupils larger ahead of the examination. This helps the doctor see all the parts of the eye better. It doesn't hurt.
As the screening is not an especially comfortable examination, local anaesthetic eye drops are usually used alongside comfort care techniques, such as swaddling, oral sucrose or expressed milk, a dummy / pacifier. Experienced ophthalmologists can usually undertake the examination in 2-3 minutes. Each eye is fully examined to check for ROP.
Screening is usually carried out two-weekly, and, if no cause for concern, stops at around 36 weeks gestational age.
If the ophthalmologist identifies early signs of ROP, the interval may be shorter as the doctor will watch to see if the condition requires treatment, or if it resolves spontaneously. Most babies with ROP will resolve spontaneously.
In the UK, approximately 4% of cases require treatment. The purpose of treatment is to preserve the anatomy of the retina, by preventing retinal detachment.
If the doctor recommends treatment, this is usually given within 48-72 hours and most commonly, it is treated with laser to the affected part of the retina.
Your baby may suffer some side effects, including inflammation (typically treated with a short course of steroid eye drops and pupil dilating eye drops for 1 to 2 weeks). Rarely, other side effects may occur. Your baby’s doctor should explain these to and discuss these with you prior to treatment.
You might already have tried to talk to doctors about your baby’s condition but sometimes it can feel like you’re on your own. With Tees by your side, you are not. We understand what you're going through, and we're here to give you a voice.
We've handled many medical claims and have a particular expertise in supporting families with babies and young children, so our team of lawyers really do have the practical experience to support you. We're persistent, and we'll fight to get answers for you and you may be eligible for compensation.
Baby A: Rentinopathy of prematurity due to inadequate care
Baby A was born prematurely at 25 weeks and 4 days gestation by caesarean section. He suffered respiratory distress, was intubated and transferred to the NICU for a period of intensive care and specialist support. He remained ventilated for 9 days, spent 22 days in Intensive Care and 7 days in the high dependency unit. During his admission, he received antibiotic treatment for sepsis, insulin for hyperglycaemia and two blood transfusions.
Baby A’s parents understood that he was at risk of ROP. However, his parents also understood that their baby would be regularly screened, so that if there were signs of ROP, he could receive treatment, significantly reducing the risk of loss of vision.
Five weeks after birth, Baby A had his first screening for ROP. At the time of the exam, Baby A was still small and in an incubator. When screened, each eye examination took around 10 minutes. Parents were advised that he would be screened every two weeks.
Baby A was transferred to a Special Care Baby Unit at a local hospital. Parents felt that the care at the local hospital was very different to what they had experienced at the previous hospital. They felt the staff treated them as over anxious young parents and did not encourage them to be a part of their baby’s care, which was unlike their experience at the previous hospital.
Whilst at the local hospital, Baby A was screened twice for ROP over a six-week period. Prior to being discharged, the Ophthalmologist spent an extended period of time examining Baby A’s eyes. During the exam the Ophthalmologist cut the white part of Baby A’s eye. After a time the despite the Ophthalmologist being unable to get a clear view, Baby A was discharged from hospital.
At a paediatric follow up the following month, Baby A’s parents told the Paediatrician that they were worried about his eyes as he would not look, follow or track. The Paediatrician said that it was just because he was a young premature baby and that they should not worry.
One month later, Baby A was referred to Great Ormond Street (GOSH) for assessment. Baby A’s parents were told that he had suffered significant and severe visual loss, equivalent of Stage 5 ROP / retinal detachment in the left eye and Stage 4a ROP in the right eye.
Baby A had surgery on the right eye at GOSH. The estimate is that post-operation he may have 2% vision in his good right eye since having the operation. It was not possible to offer Baby A any treatment for his left eye.
The hospital that treated Baby A has admitted that the diagnosis of ROP should have been made several weeks earlier and that laser treatment should have been offered within 48-72 hours of diagnosis. Now that liability has been admitted, we are seeking an interim payment to put in place some immediate support for Baby A and his family (aids, appliances, accommodation, educational support).
As a result of a review, the hospital has changed their process and procedure for ROP screening. The Ophthalmologist no longer undertakes ROP screening and the Paediatrician no longer reviews premature babies.
Baby C: Late diagnosis of retinopathy of prematurity
Baby C was born at 24 week’s gestation, weighing c. 600 grams. She suffered several complications because of her extreme prematurity including Respiratory Distress Syndrome, Chronic lung disease, Hypertension, a patent ductus arteriosus, sepsis, hyperglycaemia and necrotizing enterocolitis.
Due to her prematurity and low birth weight, C was at high risk of suffering from ROP.
Baby C was examined by an ophthalmologist at, 7 weeks old, 8 weeks old, 9 ½ weeks old
On all occasions, it was noted that there was no ROP.
At ten and a half weeks of age, Baby C was again examined. The ophthalmologist found and recorded a “definite progression of ROP stage 3 zone 2 in both eyes, + disease”.
Treatment by both laser and cryotherapy was undertaken, but, the disease being so extensive now, was unsuccessful.
ROP behaves in a highly predictable manner and, we were, therefore, able to infer that at the time of the examination when C was 9 ½ weeks of age, it is implausible that there was no ROP present. The examination must, therefore, have been substandard. With a competent examination, C would have been referred for urgent laser treatment and, on the balance of probabilities, she would have retained good functional vision in both eyes.
Baby C lost all vision in her left eye, and has a shrunken eye. She has lost most useful vision in her right eye. She is at risk of retinal detachment, retinal degeneration, the need for surgical treatment of the band keratopathy, glaucoma and shrinkage of the right eye.
C also suffers from learning, behavioural and social difficulties because of her extreme prematurity. Her visual impairment has compounded her other developmental problems.
This case has now settled for a six figure sum.
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Chat to the Author, Janine Collier
Executive Partner - Medical negligence, Cambridge officeMeet Janine
- Areas of expertise
Legal 500 UK 2023
"Janine Collier has an amazing reputation and quite rightly, she very quickly spotted something that wasn’t the main focus of the case but is able to zoom out and look at everything that’s going on and spot things others wouldn’t spot. You can tell she really cares and is a very dedicated person who just wants to help. The team are all caring and efficient."
A heartfelt thank you for all you have done in preparation for and during the settlement meeting, as well as for your unfailing support along the way, in and out of hours. It is undoubtedly due to your high professionalism if the outcome today has exceeded all expectations; it will be a huge help for us going forward and we will be forever grateful.
Chambers & Partners 2022
Janine Collier is renowned for her handling of delay in diagnosis, obstetric injury and surgical negligence claims. "She is at the top of her game and knows clinical negligence inside and out."
We consider ourselves fortunate to have been recommended to Tees by the solicitor we initially approached. We did not realise it until the case was well established that the level of professional care we were receiving was exceptional and that the experience of the individuals and the contacts they have to assist in a very complex case was the best available. We are grateful that we received a satisfactory settlement as a result of their efforts under difficult circumstances and dealing with defendants that were obstructive and disorganised. By far the greatest benefit for us however is the fact that the victim, with assistance from highly skilled experts that we would not have known about otherwise, learned to walk short distances when all other medical opinion did not consider this possible. This was their greatest achievement which is well beyond the service we expected.
Legal 500 UK 2021
"Janine Collier, head of department, is a perspicacious and very able lawyer, certainly one of the best in the region and beyond, who believes in her team and in the work she does. A genuinely nice person who sees it as her clients’ right and her duty to achieve the best possible outcome for them. Janine delivers this time after time. She is an extremely intelligent and intuitive lawyer who has a genuine understanding of the difficulties and fears clients experience when living with an avoidable injury."
Legal 500 UK 2021
"Janine Collier is a really good solicitor – she really understands the medicine in clin neg cases and works well with the team, the clients and the experts to get excellent results in difficult cases."
Legal 500 UK 2021
"Janine Collier is exceptionally good at analysis, organisation and strategy."
Legal 500 UK 2021
"Janine Collier is a really good solicitor, she really understands the medicine in clinical negligence cases and works well with the team, the clients and the experts to get excellent results in difficult cases."
Legal 500 2021
"Janine Collier shows dedication to ensuring access to the highest level of experts on medical negligence cases. There is excellent consistent communication with experts throughout a lengthy case, creating a supportive working atmosphere and ensuring long-term engagement of expert. She has a very intelligent and insightful approach to learning from experts, enabling sharing of detailed specialist information and findings with confidence, and she is excellent in multi-professional meetings with solicitors and barristers, enhancing communication in exceptionally complex cases; very high level of sensitivity demonstrated towards the needs of client throughout the case, consistently focusing on the multifactorial needs of the client, over and above the monetary compensation."
Legal 500 UK 2021
"Janine Collier has been amazing to work with. She is always quick to respond to queries, always takes time to make sure we fully understand the process and supports us to make decisions, i.e. switching from Legal Aid to no-win no-fee, with well reasoned and researched information to support us."
Legal 500 UK 2021
‘It has always been a rewarding experience working with Janine Collier and I would commend her very highly to lead on medical negligence cases.‘
The Fisher family
Janine works with empathy, understanding and compassion. She handled our mother's inquest with skill and sensitivity and guided us expertly. She kept us informed continually via email and multiple meetings and phone calls. Janine completely took the sting and the stress out of our case.