CMV Spotlight: Amy and Penelope
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating, raising awareness until I just couldn't anymore. The only story I have been sharing is mine, which is not the only one out there.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them.
Samantha: I'm so excited to have you. Please introduce yourself!
Amy: Hello! I’m Amy I’m 23 years old and I have two children, Wilfred who is coming up to three and Penny who is coming up to 9 months old.
Penelope is the happiest, most calm and relaxed baby I think I’ve ever known! She is just always full of joy, laughter and smiles. She is the complete opposite to her brother as a baby. She is a dream.
I’d always longed for a little girl, to share so many experiences I had with my mum. Shopping trips, theatre trips, lunches out, pamper nights, snuggles under the blanket while watching Disney films and eating snacks and having a hot chocolate, it was something I’d always wished for, a little mini me, a best friend for life.
Although Penny was a surprise, she was so loved and so truly wanted.
And it feels like she’s been here forever, she’s got an older brother who she adores, a mum & dad who she amazes each and every day and a family that love her.
Samantha: Before your child’s diagnosis, had you ever heard of CMV?
Amy: I had never heard of CMV. I was blissfully unaware. During my pregnancy, I worked in a before-and-after school club with children, so this is something which I think needs to be addressed. If I was aware of CMV and the risks, I would have taken more precautions. It astonishes me that it’s the most common infection passed on from mother to baby, yet during pregnancy there is no information regarding CMV, even if it was how to reduce the risk of catching it. The fact that 1 in 5 babies are born with CMV yet they believe that there is no true cause to test new born babies, I believe that should change. If the child is showing symptoms, then they can start treatment. More awareness needs to be raised about CMV, more people need to become aware, and there needs to be more research and funding that goes into CMV, as hardly anyone knows much about it! So many health care professionals have said that to me, it’s heartbreaking.
Samantha: How did your journey begin? What was going through your mind?
Amy: From the word go my pregnancy was a tough one. I had really bad morning sickness, with an episode of fainting and the paramedics being called out before 12 weeks. By 20-25 weeks, that’s when all the problems started to occur. I was up at our local maternity assessment unit with reduced growths, we had scans and her measurements were just in the normal range, she was so small. At each scan we had Penny was in a difficult position, so it was hard to check things. But things were marked off as good. By 30 weeks pregnant, I was admitted to hospital and given steroid injections as I had reduced growth to the point of feeling no movement for 3 days. The last two months of my pregnancy was consumed by going to get monitored once, sometimes twice a day and scans every two weeks. Finally at 35 weeks, I met with my consultant who decided that we were getting induced at 37 weeks, I was to come back on the Friday to do bloodwork and to get information and then I waited for that call on the Monday and by 7 pm I was in hospital to start the journey of welcoming Penelope Jessie Dorri Lees into the world. It was a long three days, on Tuesday night my waters broke and by Wednesday afternoon we were on the delivery suite, I remember the midwife saying “I finish at 8, so I probably won’t see the birth” but at 7:59 on the 21st August 2019 she arrived very quickly into the world. The midwife didn’t realize how small she was, not just her height but all her features. I remember holding her and she was going blue, hardly breathing and almost gasping, making a horrible squeak. I was in shock. I was saying to my partner and mum who were my birthing partners that “she wasn’t ok, she’s not ok.” The midwife said “get her onto the table now” the lovely red button was pressed and a swarm of midwifes entered the room. Some persuading me to get into the bed to deliver my placenta and a team with Penny, and after the longest 5 minutes she was in my arms. Life was complete!
The following day during the routine hospital checks, the newborn hearing screening failed in both ears, strange as she jumped at sounds in the room and doors closing. They came the following day and again failed, so we were made an appointment for four weeks later and we were discharged from hospital. I was trying to breastfeed Penny as I did with her brother and I was so worried it wouldn’t work and I was right. Soon enough we were getting Penny weighed every other day because she had lost so much weight. She was down to 5 pound 2 ounces and the hospital was already aware. I was heartbroken, she had her band under her tongue cut which was a long few weeks wait and I hoped that would help but it didn’t unfortunately. By week 6, I couldn’t continue to try. Penny struggled to latch to me and also a bottle, so by week 9 my milk had dried up after expressing and she was then placed onto a bottle full time. I’ll never forget the kindness of one mum while out in our local park, trying to breastfeed Penny, I wonder if she knew how anxious I felt, “keep it up, your doing an amazing job” I really needed that!
Our hearing test came around again and it had still failed in her right ear so an appointment was made in audiology, I think I knew deep down that something wasn’t right, I hoped I was wrong, but I wasn’t, after a long two hour test, the audiologists said, “it’s looking like she’s profoundly deaf” I broke down, all these worries surfaced, would she make friends, get a relationship, get the job she’d want. I was broken, I felt guilty, was it my fault? But 6,7,8 weeks pass and our little girl still wasn’t doing much, no smiles, nothing. She was very passive. Alarm bells were ringing. I stayed silent, putting it down to her hearing loss and that she’s her own person and I shouldn’t compare her and her bother. Each child is unique, but FINALLY at 9 weeks she smiled! I cried! Another 2,3,4 months passed by, Penny still wasn’t doing much, no rolling over, grabbing for toys,not much interaction in the way of anything physical. But my goodness, she is vocal! “Although she may be small she is fierce,,” that quote was made for Penelope Lees. At 5 months, we met with her consultant and we discussed her hearing loss, and they wanted to investigate what went wrong and where. Lots of information, lots of questions, lots of words spoken. Very overwhelming! It was a lot to take in. They sent urine and blood samples, it was extremely traumatic for Penny. It was such a long day. 4 weeks later Penny’s consultant phoned ,we’ve had results in and there’s been an infection detected in her urine. Don’t panic, we’ve made an appointment for the following week... We meet with the consultant and concerns are raised. She’s 5 months and she’s still not; rolling over, grabbing for toys, trying to sit, no upper body strength as she shakes when holding out her harms or trying to hold her head. Newborn heal prick results were re-sent off to check for the possible infection, there was a physio referral and we (mum, dad, brother) had a few test referrals and more for Penny were made,
Give or take a few weeks. All was calm and quiet.
Then came our first admittance to hospital for a non-blanching rash, we mentioned the possible virus she has, which can cause more problems. Antibiotics were given
and after a long 3 days, we were home and it was classed as a viral infection.
Two weeks later, she was back in hospital with another non-blanching rash in a different place and a little bit of a grumpy girl. My heart sank, up to A&E again, cue being triaged and the nurses not being aware of the virus. It is not their fault as there isn’t much research, we were again on ward 216 but nothing was in her notes about her virus or what antibiotics we were given. A little deflated but understandable due to the Covid outbreak.
The next morning we were met by some amazing doctors. Bloods, urine, scans, and eye tests were ordered after a brief history given by myself and Karl.
Ultrasound on her brain through her soft spot shows infection from the virus and eye test came back okay for now. Once we came back from the ultrasound the doctor apologized profoundly, as they are convinced it’s congenital CMV, and that she’s now 6 months so no treatment can be done. And that more tests will have to be done.
We are now awaiting, a CT, MRI, more blood samples, and ECG, more hearing tests and meeting with a infectious disease doctor, as well as another peds doctor as well as our community peds consultant.
What a crazy 8 months! I know it’s the start of her journey but we are finally getting somewhere, finally getting answers, finally getting the support she deserves.
Samantha: Tell me a little more about her conditions associated with CMV. At her age, how many specialists are on your team?
Amy: We are now at the start of our journey so we don’t really know who we’ll meet but currently we are seeing;
Community peds consultant
And we’re waiting to see;
Infectious disease doctor
Peds doctor from our ward who identified the CMV.
Samantha: What is your biggest fear for Penelope?
Amy: I just want Penny to be happy, I don’t want other people to bring her down and I don’t want others to doubt her ability. She’s perfect in every way and I want others to see that to.
Samantha: What is your greatest hope for her?
Amy: That she achieves all her hopes and dreams. I’m going to help and support her as much as I can and as much as she wants me to.
Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup?
Amy: Facebook groups are a real lifeline, the support and advice on there is so helpful especially when hospital appointments have been cancelled. It’s just nice to have others who are in the same boat, who can empathize with you, it’s really a blessing.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Amy: Take each day as it comes, you are the most important person to that little baby, they love you and you are all they need. You are so worthy, take time for you, even if it’s a nap, a bath/shower, a walk. Rest, eat what you want, drink what you want. It’s hard now but it gets easier, the dishes, washing, cleaning can wait. Cuddle, rock, hold your baby. It goes so quick. The days may seem long and the nights even longer but before you know it they’re off to school. They’re babies for such a short time. You’ve 100% got this. & it’s ok to have bad days, to cry and feel a little lost x
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Amy: “Although she may be small she is fierce”
Thank you!! Your story is beautiful, Amy, and so is little Penny. I know the fear and the panic and all of the darkness that creeps in when you start to get these diagnoses. You're doing amazing. Just like that mum said to you in the park ...I wonder if she knew how anxious I felt, “keep it up, you're doing an amazing job” I really needed that!
To read more about Penny, follow Amy on Instagram at princesspea2019
To learn more about CMV, please visit www.nationalcmv.org
If you would like to make a donation to the National CMV Foundation in honor of Penny, please visit here.