Friday, June 8, 2018

A mom discovers what the doctors missed

By Louise Kinross

Many of you know Brenda Agnew, the powerhouse behind the Parent Advocacy Link (PAL) Facebook group that connects over 1,500 parents of children with disabilities to share practical and emotional support. You may not know that Brenda’s son Maclain, 10, has disabilities that stemmed as a newborn from untreated jaundice, a condition that happens when too much of a chemical called bilirubin builds up in the blood, causing the skin and eye whites to look yellow. Left untreated,
 Maclain's jaundice caused kernicterus, a type of preventable brain damage.

Maclain was diagnosed with cerebral palsy at age one, but Brenda felt that something didn’t add up. She read Maclain’s medical records, asked questions, searched on Google and got a neurologist to look at an earlier MRI. Her suspicions that he had kernicterus were confirmed before Maclain was two. Without her investigative work, the true cause of Maclain’s disabilities would be unknown.

What happens to a parent who learns that their child’s disabilities were preventable? What happens when a mother thinks her child received the best neonatal care, only to learn that a common condition that’s entirely treatable was ignored? BLOOM spoke to Brenda about the unique emotional path of parents whose children were harmed due to medical negligence.

BLOOM: Can you tell us a bit about Maclain?

Brenda Agnew:
He’s going to be 11 in August. His physical disabilities are significant. He needs help with all daily living and self-help skills. Cognitively he’s very bright and aware, but he’s very impacted physically. He’s deaf, but he has a cochlear implants, which have given him the gift of hearing. They're wonderful, until they fall off his head and he needs someone to put them on.

BLOOM: I remember that earlier you didn’t think he was going to speak.

Brenda Agnew:
We were told he wouldn’t be verbal because his tone is so low in his body. He speaks very quickly or he laughs when he talks—with Maclain that happens often—so it’s difficult to understand, but when he takes his time and for those who know him, he’s very well spoken. That’s not always the case for kids with kernicterus.

BLOOM: What is Maclain like as a kid?

Brenda Agnew:
Maclain is a typical 10-year old who wants to knock on doors of the kids down the street, go to birthday parties and after-school barbecues, and get an iPhone. He wants to get married and already has two crushes on girls at school. He’s engaging, social, kind, friendly and accepting. He’s a wonderful soul.

BLOOM: Maclain and his twin Braden were born at 29 weeks.

Brenda Agnew:
His twin brother died in utero about 24 to 36 hours before they were born. They were delivered at the local hospital and Maclain was transferred to a level 3 neonatal intensive care unit.

BLOOM: When did the signs of jaundice appear?

Brenda Agnew:
It was around day three. You look for that yellow tinge, but there was so much going on, with so many wires. His blood work was indicative of jaundice, because he had high levels of bilirubin in his blood and a couple of other clinical symptoms. He got irritable and lethargic. Then, as the jaundice progressed, you could absolutely see the signs of toxicity: he arched his back, he had high-pitched screams, a low-grade fever and there was posturing of his limbs. At first they suspected seizures, and then an infection, but nothing came back from the lab to indicate that. They said they thought it was a delayed neurological response to the trauma suffered from the demise of his twin brother and it would take a few days.

BLOOM: So they never brought up the possibility of jaundice?

Brenda Agnew:
No. After I got his records I realized they’d tracked jaundice in his chart. There were nursing flow sheets with quite a few references to ‘baby looks jaundiced’ and someone had written phototherapy, which is the treatment, with a question mark. But they didn’t say a word about it and phototherapy wasn’t ordered.

They thought he had an infection but nothing was coming back to prove that. They didn’t have any answers. Later, we found out that not only were they using a protocol for jaundice that was outdated, but the guidelines were for healthy, full-term infants, and Maclain was neither.

BLOOM: So when did you first realize that Maclain had been harmed?

Brenda Agnew:
I remember him being discharged from the NICU with no red flags or indications that anything was wrong. I had an older son who met his milestones early, and I knew Maclain was not there, but he’d had a really difficult start. He came home in October and in December we got the confirmation that he was profoundly deaf and they said he had what they called auditory neuropathy. I Googled that and it kept coming up in references to kernicterus. Well, that’s not possible, I thought. He’s never had jaundice. He went in at eight months old corrected to have an MRI for consideration for cochlear implants, and they found something consistent with kernicterus. I asked our pediatrician and he said ‘No, Brenda, he was never treated for jaundice.’ And I said ‘But does that mean he didn’t have jaundice?’

I was always told that his cerebral palsy was probably a result of neurotoxicity caused by the loss of his twin in utero. And I was beating myself up at the time about that. But something didn’t fit. So I went to our neurologist and said can you look at this MRI? And he said it’s consistent with kernicterus, and that Maclain was also presenting in ways that suggested kernicterus.

I remember the day I went to our mail box and got the letter that said it’s not this, and it’s not that, and that our best estimate, based on the evidence, is that it’s most consistent with kernicterus. I ran in the house balling to my husband Graham, because for two years I’d been blamed for this inadvertently—that it was because his brother died in utero, and I didn’t get to the hospital fast enough.

BLOOM: But how would you have known to get to the hospital?

Brenda Agnew:
I had an ultrasound on Monday and my twins were perfect. On Wednesday, one twin passed away, but I could still feel movement because Maclain was kicking intermittently. When I went to the hospital on Thursday, because I noticed less movement, the doctor said ‘Why didn’t you get here sooner?’ I said ‘I’m sorry, I have a 19-month-old at home with a broken arm, and I’m working full-time and I could still feel kicking.’ Until we got the diagnosis for kernicterus, I blamed myself that if I had gotten to the hospital 12 hours earlier, maybe Maclain’s damage would have been minimized.

BLOOM: How did you respond when you got the letter?

Brenda Agnew:
I thought are you kidding me? I come through surviving the death of a child, I have a son who spends three months in NICU, and now you’re telling me this could have been 100 per cent preventable if he got phototherapy? Phototherapy is a common practice. It’s cheap and effective and has no contraindications. This is not okay. I need to know what happened, why he wasn’t treated and what transpired. I had already gone to the hospital and pulled all of his records so I had a good picture of what happened. Then I began a conversation with a law firm.

BLOOM: I understand you learned that the hospital was operating under guidelines for treating jaundice from a 1985-86 handbook, with a couple of updates in the 1990s, that related to full-term well babies, not unwell, premature babies. So Maclain, in 2007, didn’t meet the bilirubin threshold for phototherapy.

Brenda Agnew:
He was 1,550 grams and the old phototherapy guidelines would have treated him with phototherapy if he was 1,500 grams. That’s the difference of 10 nickels. But even the old guidelines had a second page that suggested thresholds be lowered if the baby was exhibiting clinical symptoms of jaundice. Maclain was showing all of the signs.

BLOOM: I understand the hospital only updated their guidelines in 2010, because you brought a lawsuit.

Brenda Agnew:
Yes. I know of another family whose child had untreated jaundice there at around the same time, which led to kernicterus. But they were reluctant to file a law suit because they didn’t want to give up the relationships they had with the doctors at the hospital.

BLOOM: But from what I understand, those guidelines wouldn’t have changed three years later without your lawsuit.

Brenda Agnew:
It’s still to this day, it’s hard for me to read what happened. I’m going to get emotional now. If you look at the way phototherapy works, if it’s applied on the first day, it breaks up the bilirubin and gets it out of the system, preventing anything from happening. On the second day, it can reverse some of the neurotoxicity. If they don’t get to it till the third day, the damage is irreversible. When you look at the timeline they had, Maclain could have been a typical kid today, if his jaundice was treated.

BLOOM: How do you cope with that?

Brenda Agnew:
Our legal settlement was important. Did I get an apology from the doctor? No, I didn’t. I did get an apology from the hospital, through their lawyer. I felt satisfaction when they changed the guidelines because I was confident and hopeful that this wouldn’t happen to another family. That was extremely valuable to me. The other thing the settlement helped with was it gave us a big peace of mind, knowing that Maclain would have care for the rest of his life.

I felt a bit vindicated, that in all of this I was right. It doesn’t reverse what happened, but it made me feel like I did the best I could for my son, given the situation.

The other piece is what I do to help other families. That makes me feel better. Whether it’s PAL, or being involved with CP-Net, or speaking out and telling my story, that’s the stuff I use to cope.

BLOOM: What was your role with PAL?

Brenda Agnew:
I created PAL to bring peer support for families. I’ve had battles with depression and anxiety and I left work for a reason. The nice thing about PAL was that I could do it on a volunteer basis, as I was feeling well. I did it because it was important, but it was also self-serving, because it made me really happy.

BLOOM: Was your depression related specifically to what happened to Maclain?

Brenda Agnew:
Yes. It was identified as being kind of like a post-traumatic diagnosis. It was described as being a depression and anxiety that result from something so beyond your control, that there’s no resolution or closure to it. Somebody did this. Somebody could have stopped this from happening and they didn’t, and that’s a hard one to get over mentally.

BLOOM: As you’re talking, this reminds me of some mothers whose older children had brain injury as a result of severe illness or injury. In these cases, the parents took the child to emergency and the doctor told them the child was okay, and to take them home. The parents were beside themselves—because they knew something was seriously wrong. But they couldn’t convince the medical staff.  So they took their kid home, and then the child deteriorated and was re-hospitalized and diagnosed with a brain injury. Then they felt guilty that the brain injury wasn’t identified earlier. They felt betrayed.

Brenda Agnew:
Something that came out of our experience was that I couldn’t trust the medical profession. I could not in my heart trust anybody, and I knew that compromised a lot of relationships. I couldn’t believe someone would do the right thing medically, because they had let Maclain down. I didn’t know Maclain had jaundice as a newborn, but as a Mama bear, I knew something wasn’t right. I remember being hysterical at the bedside, and saying this is not okay. I understand where those moms are coming from. It’s like watching your child drown and not being able to go in and help them.

BLOOM: Is there a support group that is specifically for parents of children whose disabilities were preventable?

Brenda Agnew:
Not that I know of. I do belong to a U.S.-based group for kernicterus, but I’ve only met a handful of moms and it’s been through telling my story. I’ve had people approach me.

BLOOM: Is it helpful to connect with those parents?

Brenda Agnew:
It was helpful, but you get mad all over again. To be honest, I don’t want to meet anyone else, because it breaks my heart to know this is still happening.

BLOOM: I think when something is preventable, it’s a very unique situation. It’s different emotionally.

Brenda Agnew:
Yes. This wasn’t a legitimate mistake. There are babies who are born at 23 or 24 weeks who have many different interventions. Sometimes an intervention will have a negative consequence, but you’re in survival mode so you move forward. That’s very different from a blatant disregard of clinical symptoms and outdated protocols.

BLOOM: How would you advise a parent whose child’s disabilities were preventable from getting stuck in the injustice of it?

Brenda Agnew:
I always encourage parents that if they have something in the back of their mind, that they believe in their heart that something happened that wasn’t right, to contact a lawyer they trust to ask the question. They have the expertise to pull the records and bring in an expert who can say definitively whether this was a negligent act, or it wasn’t. For some parents who learn treatment didn’t breach the standard of care, that can help them turn the page. Okay, I needed to know that, thank you.

I always advise people to go to patient relations at the hospital and have an investigation opened, and to perhaps consider filing a complaint with the College of Physicians and Surgeons.

You need to right this wrong. It doesn’t have to be a lawsuit. You need to amend the way something is done so it doesn’t happen to another family.

BLOOM: I guess I’m thinking more if a parent is stuck emotionally. They may have followed up so that people are accountable, but they can’t get past the fact it happened to their kid.

Brenda Agnew:
That’s where the therapy piece comes in. You need to go through the feelings and emotions you’re having. When we settled our case I thought ‘Wow, okay, my mental health will be good, and I’m going to be great.' Then I had more anxiety and panic attacks in the six months after we settled than I did prior.

I think I thought in my mind this will fix everything. I thought after eight years of fighting, it will be done. But it doesn’t leave you with a resolution. You still have a child with special needs. When I realized it wouldn’t fix everything, I had to fall back on my coping skills: my psychiatrist, my essential oils, and reading.

BLOOM: How do you use the essential oils?

Brenda Agnew:
I always have lavender and peppermint with me. They help to calm me. And I read great books, the bestsellers. That’s my escape. I started to read before bed or in the morning with my cup of tea. I also got back to walking. I’ll go for an 8 kilometer walk and I’ll talk or vent the whole way.

BLOOM: Do you walk with friends or family?

Brenda Agnew:
Sometimes by myself or with friends or my husband. I did yoga for a period. Now I’m carving out five minutes a day, which is big for me, to do breathing techniques and mindfulness. When I’m stressed out, I recite all of the U.S. states in order alphabetically. I also love my red wine and Netflix and barbecue chips.

The other thing I do is volunteer. It’s like my exercise.

BLOOM: What kind of volunteering?

Brenda Agnew:
Wherever I think I have the capacity to help. I’ve volunteered at my boys’ schools and with our local hockey association. I’m the chair of our special education advisory committee (SEAC) board and I’m on the Burlington Accessibility Advisory Committee. I do a lot of work with CP-Net and CHILD BRIGHT.

BLOOM: And now you are working as a client liaison at Gluckstein, which is the law firm that handled Maclain’s case.

Brenda Agnew:
I remember having a conversation with my firm and saying ‘Guys, you need someone on your team that can help families through the process.’ I’m there to talk to someone if they’re questioning what happened to their child, but are afraid to ask a lawyer. I understand the emotions they go through and can help them understand terminology. And I provide resources.

BLOOM: Like the compassion fatigue day where parents listened to speakers?

Brenda Agnew:
Yes. I also find other ways to engage Gluckstein in the special needs community. For example, we now support the respite program called rEcess and Ability Online.

BLOOM: What is it like to be back at work?

Brenda Agnew:
I love it. I married everything together: the special needs population of which I’m a member, and the legal aspect which was a huge part of my life for eight years, and which evoked change, and I love being an advocate. I love helping people to find their voice.

BLOOM: So even though you said earlier that you still struggle with what happened, you sound like you’ve reached a really good place in your life.

Brenda Agnew:
I think I’ve probably been more my true self in the last year than I have been since Maclain was born. I still manage my depression and anxiety. Time does have its effect. I did what I had to do to get what my son needed, I took someone to task, and a hospital protocol has changed. That lets me walk around with a little less on my shoulders.

BLOOM: It bothers me to think that there may be other parents who will never know that their child has kernicterus, and that it caused their cerebral palsy.

Brenda Agnew:
In one of my fits of rage I’ve said I can’t believe in my heart that we are the only family with a child that had jaundice that wasn’t treated and walked away with a CP diagnosis. I have heard from other families in Ontario whose children have kernicterus, or suspected kernicterus.