The birth of my son and the last two months leading up to his birth were stressful so we were really surprised and relieved when Achyuthan was born without any complications after an intense labour. However a day after his birth while still at the hospital, I started to notice that he was twitching a lot. To me it didn’t seem like the normal exaggerated startle reflex in newborns but that is what the pediatrician and nurses assured me it was so I hesitantly accepted it.
When we brought Achyuthan home, everyone was so excited and we were so busy that my fear that something may be wrong sort of temporarily subsided. It didn’t subside for long as I soon noticed repetitive jittery movements in one leg. The next morning Achyuthan had appointments with the family doctor and his pediatrician so I decided to bring up my concerns with them. That night and the following morning, Achyuthan experienced episodes of repeated blinking and chewing motions with his mouth. My heart sank because then I knew he was definitely showing symptoms of neonatal seizures. After examining Achyuthan, my family doctor mentioned that Achyuthan might just be cold, as he was a small baby and born early. The pediatrician suggested that the jerking movements may be the result of his reflux. I argued that my baby was becoming less active by the day and that he seemed lethargic and THAT surely is a sign that something is wrong, but again both doctors dismissed my concerns assuring me that seizures in newborns were very rare. Unfortunately I didn’t have a video or any sort of proof to convince them otherwise. They say a mother’s intuition is always right, and this experience is testimony to just that.
That night, I packed Achyuthan’s diaper bag and a hospital bag for myself. I packed an overnight bag for my two oldest children and prepared their lunches and snack boxes for the next day. When my parents came to pick up my daughter for school, I sent my son off as well. My husband and I headed off to the hospital. In the ER I tried to convince several triage nurses that our 8 day old baby was having seizures. We were given a bed in acute care right away and I pointed out to the nurses what I thought was seizure-like activity in a newborn and recorded the few seconds that I could manage to record on my phone. His episodes were lasting about 10-15 seconds at the time. As the pediatrician examined Achyuthan, I explained what I had witnessed expecting him to say, “the baby looks fine, you can take him home.” Instead he said, “I believe you.” I showed him the few second clips I had on my phone and the pediatrician agreed that it was definitely seizure-like activity. As upsetting as the news was, I was relieved at the same time because I knew Achyuthan was finally going to get the treatment that he obviously needed.
I am constantly tortured by the sound of my baby’s desperate cry, as nurses held him down and tried multiple times to get an IV started. I’ve never felt so helpess and even though I try to forget it now, my mind has a hard time letting go. Once the IV was in we were quickly admitted to the pediatric ward’s acute care centre. Bloodwork was ordered to check glucose levels as well as electrolyte balance. Results showed calcium levels were so dangerously low and death was imminent. Achyuthan was experiencing longer and more frequent episodes and by this time I started to record the time and duration of episodes on paper as well as record what I could on my phone. He was hooked up to several monitors and given anti-seizure medication through IV as well as the maximum dose of calcium supplementation through IV.
Achyuthan’s pediatrician set up a team of doctors consisting of a neonatal specialist, a pediatric neurologist, pediatric endocrinologist, pediatric cardiologist, and a consulting doctor from Sick Kids Hospital. We had amazing pediatric nurses and doctors and they made our almost month-long stay bearable. We were kept informed of all results and they worked tirelessly to find the cause for deficiency in serum calcium (calcium in the blood). My suspicion was always that Achyuthan’s Vitamin D levels were low but because Vitamin D tests are sent to another lab for testing, it took awhile for them to come back and confirm my suspicion. In the meantime all sorts of other tests were conducted to rule out obvious causes of hypocalcemia. Achyuthan had blood drawn thrice a day, every day for the duration of his hospital stay. My husband and I watched our baby go through multiple IV pokes, bloodtests, x-rays, ultrasounds, and EEGs and even though we were there for four weeks, it honestly didn’t get any easier. Once it was confirmed that calcium wasn’t being absorbed by Achyuthan’s body because he didn’t have any measurable amount of Vitamin D in his body, his doctors were able to start him on a proper course of treatment.
Fortunately my husband and I were both mostly able to spend nights in the hospital with Achyuthan, since our oldest two were sleeping over at their grandparents’ house. The pain from childbirth plus the inflammation from lupus, along with my newborn being sick and having to be away from two of my children, was starting to take a heavy toll on me. We were so lucky for all the support we received from family and friends. It took weeks for Achyuthan’s calcium levels to reach normal range and eventually stabilize. Once stabilized, he was taken off IV and all the monitors and we were transferred to another room where he was supplemented with calcium orally. We had many scares, where bloodtests showed that the calcium level dropped to below normal range, only for it to go back up a few days later and finally stabilize. Only once properly stabilized, were we discharged from the hospital with instructions to continue his treatment at home through oral supplementation.
To this day we are still uncertain as to why Achyuthan lacked the active form of Vitamin D in his body. One theory suggests that during pregnancy I didn’t pass on an adequate supply of Vitamin D to my baby. This is however not likely because when tested Achyuthan had a normal level of stored Vitamin D in his body – It was the active form of Vitamin D (responsible for the absorption of calcium) that he didn’t have. The second theory presented to us suggested that Achyuthan may have had transient lupus, caused by my antibodies passing through the placenta. Although extremely rare, one of the signs of neonatal lupus is Vitamin D deficiency but fortunately the symptoms go away on its own. Another theory was that the hypocalcemia was caused by stress. Since Achyuthan was induced almost 4 weeks early for showing symptoms of stress in utero, this may be a possibility. Regardless of the reason, we are thankful that our baby was able to receive the care he needed just in time.
Since having come home, I am happy to say that I have not seen any seizure activity or even lethargy in my little boy. He is gaining weight and thriving in every way – you would never suspect that he had been sick for the first month of his life or that he had been so close to death. Appointments have been going really well and Achyuthan’s blood test results have been normal each and every time since we left the hospital. He has been weaned off all his medication and I finally feel like I can breathe.
Thank you to everyone that sent prayers and positive thoughts our way. If you have questions pertaining to this subject, please feel free to contact me. More information on Vitamin D and its role in your body can be found here.
- Symptoms of Vitamin D deficiency in infants: aches and pains, hypocalcemic seizures, lethargy
- Symptoms of hypocalcemia include: twitching, jitteriness, slow heart rate, low blood pressure, and rarely seizures.
- Causes of hypocalcemia in newborns: prematurity, Vitamin D deficiency, stress, episodes of low oxygen due to difficult birth, infection, diabetes in the mother, DiGeorge syndrome, underactive parathyroid glands
- Signs of neonatal seizures: repetitive facial movements (blinking, chewing, sucking), rhythmic jerking movements of arms and legs, stiffening of muscles, staring, bicycling or pedalling movements of the legs