The year 2009 was going to be fantastic. Jason and I had great families, jobs and friends, and I was pregnant with our first children, twin girls. Abruptly, proving true the Yiddish proverb ‘man plans, God laughs’, life went off the rails. My mother was diagnosed with Stage IV pancreatic cancer and given months to live. Then, on the evening of September 19, I started to bleed at 25 weeks. We rushed to the hospital where I was admitted in labour and 3 cm dilated.
Maren and Lily were born on September 21, at 25 weeks 5 days of gestation, weighing 760 and 840 g, respectively. The girls were whisked away to the NICU where they were intubated. Our NICU education would be shockingly quick. My parents drove up to see the babies the next weekend; by this point, my mother was very sick, but she was adamant about seeing her granddaughters. That Sunday, September 27, we went out for breakfast before one last visit to the NICU. I missed the many messages that were being left by increasingly frantic doctors. Jason went to his laboratory to do some work and missed the message left at home.
When I walked into the girls’ room alone, I immediately knew something was wrong. Lily’s incubator was surrounded by people. Dr. Janvier came up to me and told me that Lily had suffered a very sudden, very severe infection. She had perforated her gut and had a severe brain bleed. She was dying. Dr. Janvier said how sorry she was. Then she hugged me, and I remember she had tears in her eyes. It was literally like being punched in the gut. Jason came from work, crying, and my stunned parents came in. We held Lily while her tubes and IVs were removed, and she died quietly in our arms with her sister sleeping in her incubator nearby. It was the only time that my mother would hold a grandchild; she died just over two months after Maren and Lily were born. Lily and my mother are buried together in a quiet rural cemetery.
The NICU experience is like living through a nightmare that you just cannot wake up from, and the next 2 months were utterly terrifying. Dr. Janvier treated Maren as if she was also infected with the same bacteria that had killed Lily. Despite that, Maren developed septic shock but survived. She had a large PDA that required ligation and had a rough postoperative period. She required numerous blood transfusions. Her CO2 was very high. She developed a fungal infection from her PIC line and needed antifungal drugs and several subsequent platelet transfusions. She required nitrous oxide and a high-frequency ventilator for a long time, which means we had very little chance to hold her. She developed severe BPD. The doctors and nurses told us many times that we had a very sick baby. We were well aware. The NICU is full of numbers: As and Bs, grams per day, ounces of milk, q3 hours, % of oxygen, level of sodium, etc. We constantly read research papers and abstracts, trying to digest the information. Our lives revolved around the numbers, percentages and statistics regarding cognitive impairment, behaviour abnormalities and motor disabilities; the outcomes for 25-week preemies with severe BPD were not particularly great. But percentages are statistics. We did not have a hundred babies. We had two but 50% had died. One was left. What did that mean for Maren?
About 2 months into her hospital stay, Maren turned a corner. She was gaining weight, her CPAP levels were slowly being reduced, no more infections. After 3 months in the NICU, she was officially a ‘feeder and grower’. We started to breathe, but not for long.
At Ste. Justine, all preemies below 26 weeks are given an MRI before discharge from the hospital. This was not presented to us as a choice, and there was no discussion of the pros and cons or even why it was done. Maren was a 25-week 5-day preemie and got an MRI; her room-mate, born just 4 days later than Maren, did not. We did not even question the reasoning behind this procedure; to us, it was just another test, medically necessary to her care. It seemed like it made sense, and I think we actually appreciated the thoroughness of the hospital. We were not aware that there is actually a tenuous link at best between MRI results and preemie outcomes. A few weeks before Maren was discharged, she was lightly sedated and wheeled down for her MRI.
I was feeding Maren one afternoon soon after the MRI when a neonatologist came to give me the results. It had identified moderate cerebellar damage from an unrecognized bleed, a bleed that could have happened soon after birth or after one of her infections. At that point, it did not really matter. Our daughter had brain damage. Two of the most horrific words a parent can ever hear. The doctor was compassionate but vague about the possible motor, cognitive and behavioural problems that Maren could face. He also said that it was hard to predict outcomes from MRIs, and it was not certain at all Maren would be disabled. In fact, many children with abnormal MRIs are not disabled. When he left, I thought ‘okay, maybe this isn’t so bad after all’. I called Jason with the news, and he soon arrived from work. As soon as Jason got to the hospital and I went home, I looked on PubMed for abstracts about cerebellar damage in preterm infants. One of the few articles that I found (Limperopoulos et al. 2007) was totally devastating. The study reported that babies with cerebellar damage had a much greater chance of expressive and receptive language delays, severe motor disabilities, cognitive disabilities and autism symptoms. This could be our child. We thought that we finally saw the light at the end of the tunnel, and then, we were handed this earth-shattering, crushing information.
Maren was discharged after 4 months and 1 week in the hospital. For the first year, we were petrified and hypervigilant, the MRI always in our minds. Was she making eye contact? Reaching for things? Showing any signs of ataxia? Babbling appropriately? Drooling too much? Acting ‘strange’? She was our first child, so we did not really know what ‘strange’ was, but were watching for it! I would imagine Maren in a wheelchair or with leg braces, in a group home or with severe autism. I started seeing a psychologist on a regular basis. Slowly, as she started meeting her milestones, our utter panic settled into something less acute.
In our case, Maren’s MRI gave us no information about what she is like today, it served only to completely terrify us. Maren is now two and a half, with no disabilities. She is a gentle, mischievous, adventurous, beautiful little girl, beloved at her daycare for being a sweet, happy child. She speaks French as well as English, and her favourite thing to say ‘c’est quoi ca?’–‘what’s that?’– reflects her curiosity with the world around her. Sometimes, we look at her with complete and utter wonder, trying to reconcile this miraculous creature with the tiny, red, ventilator-dependent micropreemie she once was, or the damaged child we thought she could be. It is very possible that a trained psychologist could identify subtle behavioural or cognitive differences between Maren and a term baby, but for all intents and purposes, she is a normal toddler and we would love her no matter what. We are also well aware that many learning issues in former preemies do not become apparent until they start school, but no MRI could ever give us this information any more than numbers and statistics could define the person our child was becoming (Fig. 1).
Looking back on our experience, parents should be given an informed choice as to whether they want an MRI done on their baby. If doctors really feel that an MRI is absolutely necessary or that the information is invaluable to them (and is this really the case?), then parents should have the choice as to whether they want the results or not. Some parents would prefer to remain ‘blissfully ignorant’, especially if there is nothing medically tangible that they can do. The decision, however, should be theirs. We are not angry at the hospital, but knowing what we know now, we never would have consented to an MRI, because it served no purpose other than to traumatize a family that had already been through so much and affect our ability to enjoy bonding with our child. Maren still received the same follow-up care; in fact, most of the professionals we had appointments with (physiotherapy, audiology, ophthalmology, speech-language pathology, etc.) said that they never use MRIs in their assessments or diagnoses, because they have such little prognostic value. Instead, they observe and let the children tell the story. Thankfully in Maren’s case, while the story may not be a fairy tale, it has a happy ending (Fig. 2).