Our journey started with Bennett during the 20 week anatomy scan, where small things were detected, but what was detected was seen as normal variants and were not overly concerning. A later ultrasound revealed Bennett had echogenic kidneys. From there we had multiple ultrasounds on the fetal assessment unit. We were told Bennett’s kidneys would need to be monitored after he was born, but nothing else seemed to look suspicious.
Bennett was breech, and after a failed attempt at an external cephalic version, the safest method would be a scheduled C-section, which happened January 4, 2021.
After he was born he was taken straight to NICU as he was experiencing jitters which turned out to be low magnesium which was soon corrected. From there however, the problems continued to pile on.
It was then discovered Bennett had a heart murmur. The echo showed he had atrial and ventricular septal defects. These ended up closing on their own spontaneously. It was also discovered he has a double orifice mitral valve which is quite rare. His heart at this time is functioning fine and will continue to be monitored. Bennett also had feeding issues, likely from his low muscle tone. A neurological assessment was done at this time including an MRI of the brain. The MRI showed he had a brain bleed in utero which resulted in periventricular leukomalacia and some thinning to the occipital corpus callosum. He had a Nasogastric tube placed for nutrition, and genetic testing followed. We were finally able to take him home after two weeks.
At six weeks we were told the news of the genetic results. Bennett was born with an incredibly rare genetic defect affecting Chromosome 13. He has a partial duplication of this chromosome, which is not something seen often, and there is only 4 reported cases in literature that closely resemble his genetic condition. Because this condition is not well studied, no one was able to give us any answers and we were left with many what if’s.
As the months passed we came to learn more about Bennett and his health complexities. It did not take long for us to realize he had global developmental delay. Everything is harder for Bennett and there are many things he is unable to do. Because of his low muscle tone he also has laryngomalacia and tracheomalacia (floppy airway) which will hopefully improve with time. We were also told because of the damage to his brain he was at increased risk for seizures and to be on the look out. Around this time as well, an ultrasound revealed he had a tethered spinal cord with increased fluid in the spine and a cyst at the base of his spine. This has required many MRIs and follow ups to monitor incase surgery is needed for it in the future. Bennett’s kidneys continue to be monitored as well but they have always functioned completely fine.
At four months and with some practice Bennett was finally able to have his NG tube removed and start feeding from a bottle which was very exciting for us. Unfortunately, around the same time we started noticing him having a twitch that he never had before. An EEG followed to investigate, and he was diagnosed with myoclonic epilepsy.
During that time we had a huge amount of appointments, follow-ups and other tests. Things seemed to stabilize for about five months. Then in November we started to notice Bennett coughing more with feeds and just in general. A barium swallow test revealed he was silently aspirating. He had the NG tube reinserted and we stopped feeding him orally. Around this time we also noticed a change in his seizures. We had a second EEG which showed a huge difference in seizure activity from his previous one. Bennett now had infantile spasms which is a very scary and difficult to treat form of epilepsy. We were given a certain medication to try as the first treatment to take away the spasms and planned for a follow up EEG.
About two weeks later we woke to Bennett in severe respiratory distress in the middle of the night and called an ambulance. He was admitted to PICU for pneumonia that night, and stayed in hospital for 16 days. After he was discharged we had a follow up EEG to see if the medication was working to treat his spasms. It showed there was no improvement. He was then readmitted back to hospital on December 28th to start the Ketogenic diet, which was the second option to treat his spasms.
The night of Bennett’s admission he started having severe difficulty breathing again. He ended up being readmitted to PICU that night and was placed on BiPAP. He had caught another virus. About a week and a half after that Bennett continued to decompensate, was very sick and needed to be intubated. Another X-Ray showed a secondary pneumonia. We have never been so scared in our lives. We had to have many difficult conversations with the care team about what we would want if Bennett did not improve. A week later he failed his first attempt at extubation after one hour. He was reintubated and three days later had his surgery for his GastroJejunal (PGJ) feeding tube. After a total of two weeks intubated Bennett was finally able to come off the sedation meds and be extubated to BiPAP. The next few days were incredibly stressful. It took his lungs a long time to adjust to the extubation, and he was also having withdrawals from the sedation meds. There was a day where they were close to having to reintubate him for the third time, but he held on. After 44 days in PICU we were finally able to go home. Bennett remains on overnight BiPAP and continuous Keto J-feeds for 18 hours a day, as well as a number of different medications. We continue to take things day by day, and stay as positive as possible.
It is incredibly hard to stand by and watch helplessly as your child goes through so many things and there is nothing you can do to help or take away the suffering. Although this has been the most challenging year of our lives we feel incredibly blessed and proud to be Bennett’s parents. We cherish every day and try not to take the little moments for granted. He is so resilient and strong!