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Charit y spotlight While this is a major step forward in detecting the virus, this is not universally car r ied out (Walter, 2024). It is also important to be aware that some babies will have delayed onset of deafness, so will not be identified by the screening. For mothers and families facing a diagnosis of cCMV, the news can be overwhelming. Midwives can provide emotional reassurance, direct them to relevant resources, such as those on the CMV Action website, and ensure that they are aware of supportive measures and services available to them. How can CMV Action help? CMV Action is the only char ity in the UK supporting families affected by cCMV.The char ity can provide free, easy‑to‑understand educational mater ials to share with parents, as well as training workshops and webinars tailored specifically for healthcare professionals, keeping you up to date with the latest guidelines and expert advice. The char ity also provides awareness raising packs, which include posters, leaflets and publications to spread messages about cCMV. td Healthcare L 2024 MA © A mother’s stor y: Hope, cytomegalovirus and Mel In some ways, we were fortunate that cCMV was picked up dur ing my pregnancy. At my 20-week scan, the sonographer noticed that our baby’s head was smaller than expected. A follow-up blood test was positive for CMV and when they tested my bloods taken at my booking appointment, it confir med that the CMV infection was recent. I had never heard of CMV, and I have had to educate myself, and others. Looking back now, I remember me and my oldest daughter, Amelia, having what we thought was flu, just before I found out I was pregnant. This was most likely a CMV infection. At around 26 weeks, we had a fetal MRI that revealed calcifications all along the r ight side of our baby’s brain. At this point, we knew that our baby was going to exper ience the world differently, but we had no idea what this would mean for her or us.We were offered a late-ter m termination but, at this point, I had felt her kicking, letting me know she was here, and I just knew that she was a fighter. As we went from one appointment to another, I turned to my husband and said ‘let’s call her Hope’. Hope was born on Christmas Day. I do not know what those first moments were like for Hope, but I am grateful I did not witness it. Hope came into the world blue and she was not breathing. I haemorrhaged while they worked on Hope. She had an enlarged liver, heart and spleen. The delivery team managed to stabilise her, giving her one of a number of blood transfusions, before taking her by ambulance to a specialist hospital 1.5 hours away. I was still in our local hospital when I received the call from my husband and father, who had gone with Hope, to tell me that they believed Hope was going into multiple organ failure and that they were planning her end-of-life care. It did not look like Hope would make it through the night. Defying all odds, I managed to get out of bed, get dressed and travel 1.5 hours to Hope on the same night that she was born. And Hope, defying all odds, made it through Christmas night. We knew that Hope’s team were not taking this day by day, or hour by hour, but rather minute by minute. She was so poorly. We prepared to say goodbye because we wanted her to know that we were already so proud of her. We needed her to know that we were not angry and that if she wanted to let go, it was okay and that we understood. But Hope was a true warr ior, and, on 19 January, she was discharged. Hope has global development delays, hear ing loss, cerebral palsy and epilepsy. But none of this defines who she is. She is a happy, strong, resilient little girl. She has just started school. She has a big sister who has had to grow up too fast, as many children who have a sibling with complex medical needs often have to. She also has a younger sister, Luna, which is remarkable because after Hope’s birth and start in the world, I was diagnosed with post-traumatic stress disorder and never imagined I would have another baby. As a parent, I try hard to protect Amelia and Luna’s childhoods, but I know that sometimes you cannot hide the complexity of having Hope in our lives. It has been overwhelming for Amelia to witness Hope having seizures or me giving her CPR. People ask me if I would want to change what happened to Hope. But here is the thing that might be difficult to understand: I would not change any of it. Any of her. I would go through everything again to have the little girl I have today. Just as she is. Because anything else, is just not Hope. There is something that I really do want to change: the lack of infor mation about CMV. Not just for the general public, but for people planning to get pregnant and healthcare professionals working with pregnant women and newborns. I would like you not to feel sor ry for us. Instead, find out more about CMV and talk about it, with everyone. Because the more people that know about it, the more families we can protect and support. Together, I believe we can truly make a difference, and I leave you with this shared sense of hope.  BJM To find out more about CMV Action, visit www.cmvaction.org.uk Dollard SC, Grosse SD, Ross DS. New estimates of the prevalence of neurological and sensory sequelae and mortality associated with congenital cytomegalovirus infection. Rev Med Virol. 2007;17(5):355–363 Kenneson A, Cannon MJ. Review and meta- analysis of the epidemiology of congenital cytomegalovirus (CMV) infection. Rev Med Virol. 2007;17(4):253–276 Leruez-Ville M, Chatzakis C, Liller i D et al. Consensus recommendation for prenatal, neonatal and postnatal management of congenital cytomegalovirus infection from the European congenital infection initiative (ECCI). Lancet Reg Health Eur. 2024;40:100892 Manicklal S, Emery VC, Lazzarotto T, Boppana SB, Gupta RK.The “silent” global burden of congenital cytomegalovirus. Clin Microbiol Rev. 2013;26(1):86–102 National Institute for Health and Care Excellence. Antenatal care, NICE guideline [NG201]. 2021. https://tinyurl.com/44ynhxnn (accessed 16 October 2024) NHS. Cytomegalovirus (CMV). 2023. https://tinyurl.com/2s4zasad (accessed 16 October 2024) Townsend CL, Peckham CS, Tookey PA. Surveillance of congenital cytomegalovirus in the UK and Ireland. Arch Dis Child Fetal Neonatal Ed. 2011;96(6):F398–F403 Walter S. Early detection pathways for congenital cytomegalovirus for infants refer red from the newborn hear ing screen. ENT & Audiology News. 2024;33(1):1–3 British Journal of Midwifer y, November 2024, Vol 32, No 11 | https://doi.org/10.12968/bjom.2024.0098 583

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Charit y spotlight

While this is a major step forward in detecting the virus, this is not universally car r ied out (Walter, 2024). It is also important to be aware that some babies will have delayed onset of deafness, so will not be identified by the screening.

For mothers and families facing a diagnosis of cCMV, the news can be overwhelming. Midwives can provide emotional reassurance, direct them to relevant resources, such as those on the CMV Action website, and ensure that they are aware of supportive measures and services available to them.

How can CMV Action help? CMV Action is the only char ity in the UK supporting families affected by cCMV.The char ity can provide free, easy‑to‑understand educational mater ials to share with parents, as well as training workshops and webinars tailored specifically for healthcare professionals, keeping you up to date with the latest guidelines and expert advice. The char ity also provides awareness raising packs, which include posters, leaflets and publications to spread messages about cCMV.

td

Healthcare L

2024 MA

©

A mother’s stor y: Hope, cytomegalovirus and Mel In some ways, we were fortunate that cCMV was picked up dur ing my pregnancy. At my 20-week scan, the sonographer noticed that our baby’s head was smaller than expected. A follow-up blood test was positive for CMV and when they tested my bloods taken at my booking appointment, it confir med that the CMV infection was recent. I had never heard of CMV, and I have had to educate myself, and others. Looking back now, I remember me and my oldest daughter, Amelia, having what we thought was flu, just before I found out I was pregnant. This was most likely a CMV infection.

At around 26 weeks, we had a fetal MRI that revealed calcifications all along the r ight side of our baby’s brain. At this point, we knew that our baby was going to exper ience the world differently, but we had no idea what this would mean for her or us.We were offered a late-ter m termination but, at this point, I had felt her kicking, letting me know she was here, and I just knew that she was a fighter. As we went from one appointment to another, I turned to my husband and said ‘let’s call her Hope’.

Hope was born on Christmas Day. I do not know what those first moments were like for Hope, but I am grateful I did not witness it. Hope came into the world blue and she was not breathing. I haemorrhaged while they worked on Hope. She had an enlarged liver, heart and spleen. The delivery team managed to stabilise her, giving her one of a number of blood transfusions, before taking her by ambulance to a specialist hospital 1.5 hours away. I was still in our local hospital when I received the call from my husband and father, who had gone with Hope, to tell me that they believed Hope was going into multiple organ failure and that they were planning her end-of-life care. It did not look like Hope would make it through the night. Defying all odds, I managed to get out of bed, get dressed and travel 1.5 hours to Hope on the same night that she was born. And Hope, defying all odds, made it through Christmas night.

We knew that Hope’s team were not taking this day by day, or hour by hour, but rather minute by minute. She was so poorly. We prepared to say goodbye because we wanted her to know that we were already so proud of her. We needed her to know that we were not angry and that if she wanted to let go, it was okay and that we understood. But Hope was a true warr ior, and, on 19 January, she was discharged.

Hope has global development delays, hear ing loss, cerebral palsy and epilepsy. But none of this defines who she is. She is a happy, strong, resilient little girl. She has just started school. She has a big sister who has had to grow up too fast, as many children who have a sibling with complex medical needs often have to. She also has a younger sister, Luna, which is remarkable because after Hope’s birth and start in the world, I was diagnosed with post-traumatic stress disorder and never imagined I would have another baby.

As a parent, I try hard to protect Amelia and Luna’s childhoods, but I know that sometimes you cannot hide the complexity of having Hope in our lives. It has been overwhelming for Amelia to witness Hope having seizures or me giving her CPR.

People ask me if I would want to change what happened to Hope. But here is the thing that might be difficult to understand: I would not change any of it. Any of her. I would go through everything again to have the little girl I have today. Just as she is. Because anything else, is just not Hope.

There is something that I really do want to change: the lack of infor mation about CMV. Not just for the general public, but for people planning to get pregnant and healthcare professionals working with pregnant women and newborns. I would like you not to feel sor ry for us. Instead, find out more about CMV and talk about it, with everyone. Because the more people that know about it, the more families we can protect and support. Together, I believe we can truly make a difference, and I leave you with this shared sense of hope.  BJM

To find out more about CMV Action, visit www.cmvaction.org.uk

Dollard SC, Grosse SD, Ross DS. New estimates of the prevalence of neurological and sensory sequelae and mortality associated with congenital cytomegalovirus infection. Rev Med Virol. 2007;17(5):355–363 Kenneson A, Cannon MJ. Review and meta-

analysis of the epidemiology of congenital cytomegalovirus (CMV) infection. Rev Med Virol. 2007;17(4):253–276 Leruez-Ville M, Chatzakis C, Liller i D et al.

Consensus recommendation for prenatal, neonatal and postnatal management of congenital cytomegalovirus infection from the European congenital infection initiative (ECCI). Lancet Reg Health Eur. 2024;40:100892 Manicklal S, Emery VC, Lazzarotto T, Boppana

SB, Gupta RK.The “silent” global burden of congenital cytomegalovirus. Clin Microbiol Rev. 2013;26(1):86–102 National Institute for Health and Care Excellence.

Antenatal care, NICE guideline [NG201]. 2021. https://tinyurl.com/44ynhxnn (accessed 16 October 2024) NHS. Cytomegalovirus (CMV). 2023.

https://tinyurl.com/2s4zasad (accessed 16 October 2024) Townsend CL, Peckham CS, Tookey PA.

Surveillance of congenital cytomegalovirus in the UK and Ireland. Arch Dis Child Fetal Neonatal Ed. 2011;96(6):F398–F403 Walter S. Early detection pathways for congenital cytomegalovirus for infants refer red from the newborn hear ing screen. ENT & Audiology News. 2024;33(1):1–3

British Journal of Midwifer y, November 2024, Vol 32, No 11 | https://doi.org/10.12968/bjom.2024.0098

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