You can always ask for a second opinion on behalf of your child. This may be because you are not satisfied with the care your child is receiving or you are unhappy with a decision your child’s doctor has made. It may simply be because you have a complex or difficult decision to make and you want a fresh perspective to help you get to a place where you are happy with the plan for your child. Here, parent Emma Headings, talks about the process of getting a second opinion twice for her daughter Izzy.
Our daughter, Izzy, who is now 9 years old, has been looked after by multiple medical teams since she was born. She was diagnosed with kidney failure at birth and received a transplant at 2 years old. She has several complex conditions which make treating her challenging. As parents, we must ensure that we have a very good understanding of treatment options and advocating for her when difficult decisions need to be made. We are fortunate that we both have scientific educational backgrounds which helps with understanding terminology. Over the past 9 years we have become experts dealing with her medical needs, but the rareness of her condition requires us to place trust in her medical teams to ensure the best possible outcomes.
At times this can be exhausting, overwhelming and frustrating when you do not feel like you are being heard when raising concerns or wanting to seek alternative treatment routes. This is why having the right to seek a second opinion is crucial. As parents we have requested second opinions in both an emergency, and when making decisions for longer term care. We share our experiences here in the hope that it will make other parents feel empowered and have the confidence to seek a second opinion when necessary.
At only 15 months old, Izzy become acutely unwell whilst on her overnight dialysis machine at home. Although not presenting many symptoms at the time our gut feeling was to take her straight to the emergency department. Over the next 12 hours she steadily deteriorated as the doctors and nurses tried to find the cause. It was suspected that she had suffered a bowel perforation from a newly inserted feeding tube 10 days previously after peritonitis from dialysis had been ruled out. The specialist team were called and initially suggested that this was unlikely to be the cause. However, the registrar (a junior doctor) and ourselves were not happy with this conclusion and insisted that the senior surgeon be called for a second opinion. The hierarchal structure in hospitals can make it difficult for junior doctors to speak up with their concerns and parents can feel very intimidated at a time when they are at their most vulnerable. Izzy was fortunate that we had a junior doctor willing to ask for another opinion alongside her father but if Martha’s law had been in place at the time this would have made things easier. Ultimately, the second surgeon requested scans which confirmed a bowel perforation, and she was taken for life-saving surgery. After a week in intensive care and 5 weeks on the ward she was able to return home. It might have been a very different story if the second viewpoint had not been sought so swiftly.
When Izzy was 7 years old, she was diagnosed with a severe curve of the spine (scoliosis). This was devasting news to receive after everything she had been through. Suddenly we were thrown into a world of multiple X-rays and specialist scans, back braces, growing rods and discussions of spinal fusion surgery. Treating early onset scoliosis can be challenging and there are several options to be considered to achieve the best outcome. The severity of the curve meant that bracing is unlikely to make any difference with more invasive options such as growing rods an alternative. The other option would be to watch and monitor closely with regular follow-up if her spine is flexible. Growing rods have their own associated risks which could be compounded by Izzy’s comorbidities (a person has more than one disease or health condition at the same time). As parents you are presented with options but there is no definitive right choice and ultimately the decision is down to you – you are the one that signs the consent form albeit informed of the associated risks. We were fortunate that our Spinal consultant, suggested that we might want to seek a second opinion from another specialist team in the UK due to the complexity of her case. This would allow us to make a more considered decision based on the balance of viewpoints and the data. Of course, we should have the confidence to request this whether the consultant suggests it or not, but we are grateful we have a supportive spinal team behind us.
The process of seeking the second opinion was not easy and at times frustrating but we are very glad we did it and had a very positive experience. It took nearly 10 months to be seen at another hospital from when our consultant referred Izzy. We had to facilitate multiple conversations between medical secretaries (who were lovely!), double check that scan results were sent across, navigate the different appointment booking systems at the hospitals and cope with the frustration of short notice appointment cancellations. The referral was at a hospital nearly 200 miles away from our home. Fortunately, we had relatives to stay with, but it is important to consider the feasibility of how you might attend a second opinion appointment and the cost. It might be possible to have meetings with specialists online for example.
In the end the appointment outcome gave us the information and empowerment to feel confident with our choice for Izzy. We are watching and monitoring closely until the time is right for her to have definitive spinal surgery. It was such a relief to make a decision and feel that our concerns have been taken seriously.
As a mother I have always known when something hasn’t been quite right or that I don’t feel confident and well enough informed to make a medical decision. As parents we have learnt over the past 9 years to speak up when we are not happy. I used to worry that the doctors might think I was overreacting, and I was wasting their time, but this has never been the case. The medical teams care deeply but sometimes it is necessary to call things out when you have serious concerns. I hope that with the advent of Martha’s Rule it will empower patients, families, and staff to seek an independent medical review if concerns are not being adequately addressed, it might just save a life.
If you are thinking of seeking a second opinion on your child’s care, we have information on how to do that here.