“They’re 3 years old already, and you only had them diagnosed 4 months ago?” I hear you say, “Why so late?” Let me fill you in on that journey…
Expecting twins was quite a shock. We have no twins in either side of our family, and so seeing two little heart beats on the sonar scan at 8 weeks gestation was one of those moments that I’ll never forget. Being doctors, my obstetrician, questioned my husband and I whilst staring at the ultrasound screen, “Do you see what I see?” And we did! We were both speechless, and remained that way for about a week whilst we contemplated everything becoming two-at-a-time!
For the first 16 weeks of my pregnancy, I had hyperemesis gravidarum. A fancy sounding diagnosis essentially describing excessive “morning (more like 24 hour) sickness”. This is often associated with twin pregnancies, and as a result, found myself in an out of hospital for rehydration. During this time of feeling so ill, I was so careful not to take any medication that could harm my developing babies. After 16 weeks, my symptoms eased and the rest of the pregnancy was uneventful and the twins were born at 37 weeks by caesarian section. They were well at birth and we were discharged three days later. The girls did not receive any hearing screening tests, neither were we offered to have their hearing screened by the hospital or our pediatrician. To be honest, the thought didn’t cross my mind, as routine hearing screening for all newborns is not something that is advised or promoted at medical school. We are taught to refer all “high risk” cases (e.g. babies that have been sick in NICU or premature babies) but my girls did not fall into a “high risk” category and so fell through the cracks of a segmented system.
The first 3 months of their lives were very trying. They both had “colic”. Something the medical word often sees as a misnomer. Well, it was very real to us. They screamed almost all day and night and hardly slept. My husband and I now see the funny side of a straight 72 hours where neither of us were able to sleep, brush our teeth, eat or dress as a result of the inconsolable screaming. Sleep deprivation very nearly pushed us over the edge into insanity! At this time we were living in a remote rural setting, so were quite isolated in our situation. As the months went by, things did get a little easier as they started to sleep. I remember one particularly frightening storm where the thunder was loud enough to wake the dead. We were continuously anticipating them waking up, but they didn’t. We labeled them “sound sleepers” at this point, we were very grateful for this change but still didn’t think about their hearing.
Their motor milestones were all on par, and they were babbling at the expected age too. Both of their first word was “mamma” at about 6 months, and at 9 months they were saying a few simple words like “cat” but pronounced “ca” and dog pronounced “doe”. Hadassah was saying “Hallelujah” very clearly and frequently at 9 months and, Tahlita, would call “Hadassah”, again very clearly at the same age. They’ve always had a million little nick names and endearing names that we’ve called them, so when they weren’t responding so well to their names, we put it down to an element of confusion. Again, being in a remote setting, with really mostly Zulu speaking children as their little friends, we had another reason to explain their speech delay. It was only when they were about 2 years old when I started to wonder about their hearing. It was becoming increasingly difficult to get their attention, and their language development had essentially plateaued. They were also no longer saying many of the more difficult words. I’d go onto Facebook (as this was pretty much my only link with the rest of our friends and family) and view all the little video clips from friends with children the same age singing nursery rhymes. I’d also read the hundreds of “cute things my baby said today” type quotes posted on friends “walls”, and realized how far behind the twins were. Initially, I tried to explain the delay a number of ways. They were both obsessed with their dummies (pacifiers), possibly this was the cause. I “Googled” “pacifiers and speech delay” and didn’t find much evidence to link the two, but in spite of that, went through a crazy few days of “ditching the dummies”. No improvement. Maybe, I was just not stimulating them enough, I wondered. So out came my list of baby play activities and every afternoon we’d do loads of story books and play with the emphasis on language. (Again, quite difficult logistically, as a little baby Eden was also now part of the family and was ALSO colicky!) They did start picking up the odd new word, but not at the rate I was hoping for, and did sometimes respond to sound, e.g. the music to Telly Tubbies, so on a whole I was rather confused.
I then started phoning around for advice. We lived 5 hours from the nearest city, so popping down to the nearest specialist was not a feasible option without special leave and a whole lot of organization. I did however set up telephonic appointments and spoke at length with Pediatricians, Speech Therapists, Audiologists and Occupational Therapists, just to ask if they thought that deafness was a possibility. They all concluded that I was possibly being just a paranoid doctor-mom, and that the most likely reason for their speech delay was that they were twins who had developed their own special little language and means of communication. I was also told stories of children who first spoke when they were 4 years old, and then came out with full sentences from the start and became Harvard graduates in the end. One person actually advised me to not show any signs of praise or joy when they did show an effort to speak as perhaps “they were having me on” and were playing on my excited response to new words. When it’s your child, and you’re worried, all logic and professional expertise goes out the window, as fear and panic sets in. These professionals advised me to do home based speech therapy, and I was emailed a lot of ideas and exercises which I immediately put into action. Some days they would respond quite well, and others were painfully unrewarding. So again, my thoughts were tossed back and forth around what was actually going on. I was advised to reassess things when they turned 3 years old, and then take it from there.
In May this year (they were 35 months old), Graeme and I had to attend a two week course in Johannesburg. The three girls were going to come with us and would attend a play school during the day whilst we were out. I specifically asked all concerned to closely watch them over the next two weeks and see if they thought that possibly they may have hearing loss. At the end of the two weeks, everyone confidently said that they thought they could hear normally but thought that at times they would just be so engrossed in their own little world, which explained their not responding to their names and instructions. I distinctly remember saying to my husband, that at least we could be sure that Eden wasn’t deaf, as every day when we got back, she was saying a few new words as a result of lots of attention from Granny. One afternoon, I had gone to the front of the house to make a payment for our accommodation. I then heard Tahlita screaming as she had tried to follow me, and then couldn’t find me. I ran outside to show her where I was. Her back was to me and she was frantic. I called her name on top of my voice, but she did not turn around. I called and called; no response. It was only when I went up to her and touched her that she flung around in relief of having found me. That was quite a sinking feeling, as my fears over the past year coalesced into a glaring reality, “I think Tahlita really is deaf.”
When we got back home, I made the booking for an audiologist in the nearest town and reasoned that if Tahlita’s hearing was normal, then Hadassah’s would be too. (I was also wondering if this was an auditory processing problem rather than a sound access problem; I guess I was also in denial to some degree). The screening test was done in a sound proof booth using head phones. My little Tahlita was extremely compliant and put the little coloured fish into the box when she could hear the “beeps” transmitted through the head phones. She was sitting on my lap for the test. I would hear the beep, and still she kept the little fish to her ear. “Beep”, this time a little louder, and still the fish didn’t move, only sometimes with a very loud signal (that was really loud for me in spite not being the one wearing the head phones) she’d drop the plastic fish in the box. Nearly 3 hours of repeating this process to double check that she was getting the concept of putting the “fishie in the box if she heard the beep” passed, and gently the audiologist explained that she had picked up that Tahlita had “hearing loss” in both her ears, the right being worse than the left. She explained that she would need to have an ABR/ASSR test to confirm her findings and that there was a possibility that her results may be erroneous considering that we were relying on the understanding of a 3 year old who couldn’t communicate much at all. I left the consultation room feeling hot and dizzy, sat behind my steering wheel about to begin the journey home, and had a good cry. Such a mixture of emotions as I still held onto a thread of hope that we were all wrong. I was confused and afraid. I desperately wanted to know if they were deaf and in the same breath, terrified to face a reality that I was in no way prepared for, or in my mind, capable of dealing with.
I made a booking for the ABR test for both of them for 2 weeks later. It was a very long two weeks of imagining the worst and then consoling myself with my thoughts of denial that it would all be okay. They were just twins in their own little world, with their own little way of communicating. I was a paranoid mom, and thank heavens we knew that Eden had normal hearing!
Reflecting back on this process, it is so obvious that they had significant hearing loss. Fear is a very real and limiting emotion that can blur reason and all evidence. As a professional myself, my greatest lesson from this is that the parent always knows best! As a doctor that works mostly with pediatrics, I now listen to the parents’ history and story in a very different way, and importantly acknowledge that I have actually heard them. It has also been a costly experience of realizing just how important early hearing screening is and strongly believe that it should be done routinely for all babies. I appreciate now too, that early intervention is so important to the development of language (whatever modality), and language essential in the development of thoughts, concepts and relationships. I so wish that I had been educated on this, and that the professionals whose help I sought had referred me for testing and intervention at the time of my very first call. I do feel like “I missed the boat” in a big way, and guilt has been something that I have had to deal with. This is where my realization of the power of choice has been extremely helpful. I could spend all my energy in dwelling in the past with all the “should have’s” and “what if’s”; who did what and who said what – I really could go back and forth for ages. Or, I could acknowledge and accept what I have, and move forwards. Take one day at a time and make one decision at a time. Become an advocate for early screening and intervention and embrace and choose to enjoy a world that I was very ill equipped for. The choice is mine, and I want to get this one right.