This is part 2 of a series, please start by reading part 1 first: The dark cloud of cytomegalovirus
Adjusting to life with a newborn, becoming a mother for the first time is lovely but hard.
Suddenly you have a huge responsability, no more decent sleep, waking up every two hours.
I had a lot of pain from my c-section which made it extra hard to care for a newborn alone.
Thankfully my parents helped me from time to time.
Looking back I remember how I actually did not think too much about her diagnosis. I was just too busy taking care of her.
I was with my family all the time to distract myself from thinking about it.
But at night, when it was just me and her, when the loneliness crept up to me I cried.
This blogseries is actually the first time that I am really talking about it.
I always tell people I am okay since I dont want anyone to ever worry about me.
University hospital of Antwerp
When Daya was 2 weeks old we were expected at the University Hospital of Antwerp.
They had planned for an MRI scan of her brain and an eye test. Her blood had already been tested 2 days prior by her pediatrician to check her liver and kidney stats. Luckily they were all fine. I was so happy when I was told it was perfect.
Since she had to be put asleep for her MRI scan we would have to stay overnight so they could check on her.
We arrived early in the morning, my father had dropped us off.
I didn’t sleep anything the night before, I was so stressed.
After checking in we went to the neonatology floor. We got a room that was extremely technological, all those machines for those little babies.
The neonatology department of the University Hospital of Antwerp is deemed the best in Belgium, and it could definitely tell !
The nurses came in and told me to settle down and unpack my bag. Daya had to put on a dress without metal buttons for her MRI.
I changed her diaper and sat down to feed my precious baby.
It was only 2 weeks after my c-section, I was still stiff and in pain, yet there I was.
When it was time to give her a nasogastric tube to give her sedatives. I had to hold her down, she was crying so much.
I would too. And I did.
The sedatives started working and she fell asleep. She was monitored and hooked to machines.
If you have ever been on a neonatology department you know how many beeps and bleeps you hear from the machines.
Every Time I heard a beep my heart stopped.
I was scared she might get an allergic reaction to the sedatives. So I watched her closely.
Once she was in a deep sleep we went to the radiology department. It is a huge hospital so it was quite a long walk. I was dying from pain due to all the walking, yet I (wo)manned up.
When we arrived at the radiology department I gave her a big kiss and watched them prep her for the scan.
There she was, my heart and soul, so vulnerable. It was the worst moment ever, seeing such a tiny baby in such a big machine.
I couldn’t stay there for the scan so I waited in the waiting room. What was actually only 1 hour felt like a thousand years. There were so much disastrous scenario’s going on in my mind.
I went to the toilet and just sat there crying. I had never felt more alone, more powerless in my life than then.
The wait is over
I returned to the waiting room when it was time. We headed back to our room and put Daya in her bed. She was still sleeping so I had to pump breast milk so they could feed it through her tube.
Hours passed by and I just sat there, waiting and watching my precious angel. When she woke up a doctor came in to do a quick ultrasound of her brains.
She told me she thought she could see some ulcers on the sides of her brain. I had to wait for the result of the MRI scan for the final conclusion.
After I was done feeding her she just laid there and looked at me, I had tears in my eyes.
I was so scared after I heard about the ulcers, yet when she was looking in my eyes I felt at peace.
No matter what would happen, I have her, and she has me.
Eye see the results
The day after the eye doctor came to test her eyesight. She used such a scare instrument yet I was more distressed by it than Daya.
When the doctor told me that her eyesight was perfect I felt such a relief. That was another thing that I could also scratch off the list .
One of the other doctors came by to talk about the MRI results. I received the confirmation that she has cysts at the left and right side of her brain. He told me it could mean nothing and not affect her, or it could mean everything and affect her in a bad way. So basically I didn’t know anything yet.
We were supposed to do a hearing test too, but with everything being arranged so quickly there was no time free. So we got cleared to go home.
I left the hospital with more baggage than when I came in.
A week later we had our apointment with the professor to talk about her results. She would also get her hearing test. But since there was extremely bad weather all the roads were blocked in Belgium. We tried to go but we got stuck in the snow for hours.
I could explode at that time.
Hearing test Kind & Gezin
Because we needed the results quickly I asked “kind & gezin”, a free service in Belgium, to check her hearing with their basic test. Sadly they only had a place free the day before the new apointment for her testing at the hospital. Way too late for what was actually needed (to start the treatment if needed), but I did let them come for the test.
The nurse installed her computer and put the headphones on Daya’s ears. The noises were loud enough for me to hear it.
Her right ear did not give any response to sound, her left ear however did. The nurse thought that maybe something was broken so she tried another time.. And another..
The line of her right ear kept flat, while her left one was nicely moving.
I didn’t expect her to be deaf, since she would wake up when the dogs barked.
It never came to my mind that you can be deaf in only 1 ear.
Hearing test at the hospital
The day after she had her extensive hearing testing at the hospital and a meeting with the professor.
The past 24 hours I hoped and prayed that the machine in fact was broken, and that she wouldn’t be deaf in her right ear.
However I was grateful that if it was correct, she would still have her left ear.
The tests confirmed that she was completely deaf at her right ear, and her left ear was perfect. The doctor talked to me about how she could live a perfectly normal life, taking some adjustments in account.
She would need an earphone in class to understand the teacher. She can’t ride a bike alone since she can not hear where sounds come from. And she would be unable to hear someone in large rowdy crowds.
I could have chosen to give her a cochlear implant, however as long as her left ear stays perfect it isn’t really necessary.
Afterwards we had to go to the Professor to talk about all her results.
Since she had 4 symptoms of Congenital CMV (hearing loss, petechiae, dysmature, ulcers on her brain) it was in her best interest to start a medical treatment.
I could chose however to do the treatment or not, since it is with really heavy medication which requires close monitoring. He told me everything about it, how it is supposed to make sure that she wouldn’t lose her hearing in her left ear, that the virus wouldn’t spread to the rest of her brains.
I was told that most babies have to stop the treatment (which lasts 6 months) due to liver or kidney problems caused by the medication. It was required to get blood tested every week in the beginning, afterwards every 2 weeks, to then finish by once a month.
The results of the treatment would be kept in a study about congenital cytomegalovirus patients if I accepted to.
I didn’t think one second about not giving her the treatment.
I was determined to give her every chance and opportunity.
We also talked about how in the future she would have to go to a rehabilitation center to test how she is developing.
The ulcers could cause her to have trouble with walking, her motor skills.. However since babies have good brain plasticity it could also mean nothing. It’s also a possibility for her to still get deaf in her other ear until she is 6-7 years old. But with the medication that should normally be prevented.
Valganciclovir was the name, a medication that would be around 700 euros per box.
However since it is a university hospital they could get free samples for their study.
And I was thankful beyond words that we could use those free samples to make a syrup for her.
Otherwise I would not have been able to afford her medication.
Later on when we finished the treatment I learned that it is a mutagen and a carcinogen, and that it could cause infertility.
But I not for one second regret giving her every possible chance by doing the treatment.
Sometimes you have to choose between something that might be the best or the worst thing ever, and just hope for the best.
The day after we started with her treatment.
This was part 2 of a series about Daya’s CMV story, part 3 can be found here The epic battle between Valganciclovir and Cytomegalo
Thank you for reading,