Brendan B. McGinnis Congenital CMV Foundation main page

Public Awareness and Vaccine Research Support. Working Together to Eradicate Congenital CMV Disease.
Member of the External Partner Group, in conjunction with the National Center on Birth Defects and Developmental
Disabilities (NCBDDD) and the Centers for Disease Control and Prevention (CDC)

Brendan B. McGinnis Congenital CMV Foundation |

The Brendan B. McGinnis Congenital CMV Foundation is a non-profit 501 (c) (3) dedicated to The
Brendan B. McGinnis Congenital CMV Foundation is a non-profit 501 (c) (3) dedicated to for CMV,
and to affect change in the medical community so that physicians will begin to test women raising
public awareness about congenital CMV, to raise donations to support research for a vaccine for
CMV prior to pregnancy. Ultimately, our mission is to save babies yet to be born from suffering the
often devastating consequences of congenital CMV by eradicating this common but potentially
life-altering virus.

In Loving Memory of...

Musa
October 15, 2007 - August 10, 2011

I can't describe the feeling when I found out I was pregnant, it was so exciting! My husband and I
were sitting there in the doctor’s office when I was told I was pregnant, he looked at me and
could not stop smiling. It wasn't a planned pregnancy but we were still over the moon. I went to
my first ultrasound at 19 weeks and it was so exciting to see my baby. Everything was fine so
far, until the sonographer told us she is just going to call the doctor to come and have a look
that she needs a second opinion. My husband asked what's wrong and she said it's probably
nothing. So we were nervously waiting. When the doctor came he looked at the ultrasound and
basically told us that the left ventricle of the brain is dilated. When we asked what that means he
said that there is a little more fluid in there than there should be. I panicked, I didn't know what
that meant. We were given a referral letter to go see another specialist.

Our first visit there was one I would like to forget. I had an amniocentesis ( where they draw out
fluid from the amniotic sack) to test for chromosomal disorders. The next time I visited the results
were back and it was all normal. The doctor wanted me to come and get regular scans
throughout my pregnancy just to be on the safe side. Because I was considered a high risk
pregnancy and they didn't know what was wrong with my baby, the doctor wanted the baby to
be taken to NICU once he was born and to have an MRI done straight away. Being pregnant is
supposed to be fun and enjoyable. I spent most of my pregnancy worried, crying and full of
mixed emotions. On the last visit before the delivery I was told there were no changes and that it
is probably nothing to worry about.

Musa was born at 39 weeks weighing 2.7 kgs by natural delivery. I remember being able to hold
him only for a few seconds and his eyes opened and looked at me, my heart just melted. I
couldn't believe I had a beautiful boy! He was then taken to the nursery. I went down to see him
not long after. He was so doing so well they didn't take him to NICU and decided not to do an
MRI. He spent the first night in the nursery. The second night he was with me. By day 3 we were
allowed to go home. I was so relieved that everything was okay.

I could not stop staring at my son when we got home, after all that worry everything was
perfect. At 2 weeks of age he started uncontrollable screaming, we had tried everything and
nothing worked. When Musa was 5 weeks old I just thought something was not right he was
constantly crying so I decided to take him to the hospital. When I was there the doctors asked
me if the movements he was doing was normal. I told them well he always does that and I
thought it's normal for babies to get “startled”. They told me he is having seizures. Straight away
they rushed him inside and starting putting lines into him and giving him drugs. I was just
standing there shocked. From here is when our whole life changed…

From the blood tests we found out he had CMV and that it was contracted in utero. I had never
even heard of this before. We also did an MRI which confirmed the brain damage it had caused.
We didn't know what we were in for...

Sadly my precious Musa passed away on the 10th of august 2011 at 11.50pm.

He had been through so much in his short life. Musa had many complications due to cCMV.
Here are some of these issues:

* Hearing loss in both ears and fitted with a hearing aid in his left.
He still had some point of normal hearing in his right.
* Severe Microcephaly.
* Severe epilepsy which he had all his life and couldn’t be controlled despite being put on
numerous medications. Had literally tried every medication there was to try including the
ketogenic diet. None of them worked, he was actually getting worse
towards the end he was always on midazolam infusions.
* He also aspirated a lot and had pneumonia as a result 1-2 times a month
* G-tube for feeding and a fundoplication because of his severe reflux, which did not help as he
aspirated on his own secretions and still refluxed even though he had the fundo.
* Because of his poor sucking and coordination he needed suctioning
throughout the day or he would choke on his own secretions.
* We also had to feed through a pump as he did not tolerate feeds really well,
therefore we had to slow down the feeds.
* Chronic lung disease
* Musa also had severe developmental delay. He could not sit on his own, roll over or talk.
* Cortical Vision Impairment
* Osteopenia
* Cerebral Palsy and required Botox for various parts of his body,
calves, thighs, salivary glands etc.
* Obstructive apnea and central apnea
* Musa had spent most his life in hospital, the longest stay was 40 days.
And he had also been to the ICU 4 times.
* Had been in palliative care for the last year of his life.

The last year had been the hardest on Musa’s life. The amount of time he spent in hospital was
becoming longer and the complications and health problems adding on to his list became longer
as well. He was a very sick boy and medications were keeping him alive, barely. It wasn’t until his
last 3 months with us that he had just gotten to the point where he was getting so bad, I was
getting really worried. He was just not himself. I hardly saw any smiles. He was always sleeping as
a result of his medications being pushed up. Every time I watched him sleeping and breathing I
would just cry. I couldn’t stand watching him so knocked out but knew there was no other way
to keep him comfortable. Because he was so sick, every breath he took was a struggle.
My baby was deteriorating in front of me and there was nothing we could do
but make him comfortable and pain free.

Things really started to take a turn when he started to reject feeds. At this point we were battling
trying to stop his seizures as he was going in and out of status elepticus constantly. He also had
aspiration pneumonia, pseudomonas and staph in the lungs and just recently had a port placed.
He was also being fed transpyloricaly as he was not tolerating feeds for a while. He still managed
to vomit and aspirate. He would not even tolerate 5mls/hr of gastrolyte. His bowel movements
were horrible even through he was not getting anything he had nonstop diarrhoea. At this stage
I knew in my heart this is not a good sign. We had a meeting with his paediatrician and also
palliative care. We were told that there was nothing we could do for him his kidneys are probably
already shut down and his organs were just failing. I was a mess at this stage. I was told he
probably has around 24-48 hrs before his body will be so weak his heart will stop. I had the
option to take him home. I was so scared to take him home, but I knew I had to do it for Musa’s
sake. It was so hard to take him home to pass away but he spent so much time in the hospital
I didn’t want his final days there as well.

Going home and saying goodbye to all the nurses and doctors was very emotional they were like
family to us. When we got home reality hit. I was ready to run back to the hospital so many
times as Musa got worse but stopped myself thinking they cannot do anything about it. I just
kept strong and spent every minute of my time with my little angel. It was the hardest thing
anyone can go through, day by day watching him die. He looked like he was suffering so much
but he was comfortable as we came home on the midazolam infusion and morphine. So he was
peaceful and comfortable sleeping the whole time. Each day I kept thinking this is it, as he was
taking long breaths and then stopping for a while then taking another breath. It was so hard to
watch. On day 2 at home he opened his eyes and tried to talk to us making noises. I was so
happy we got that last chance to see his beautiful eyes and have him look into ours so we can
reassure him everything will be alright. Then half an hour later he closed his eyes and slept again.

We watched him like this for 6 days at home. He was holding on, I always said he was a fighter
and here he was proving it. On his final day I was just holding him and cuddling him and kissing
him so much. I had not eaten properly in days or slept I just wanted to be with Musa every
minute I can. By this stage he was just skin and bones every time I looked at him I broke down
crying thinking we battled all these years with his feeding to make him healthy and look at him
now. That day was just horrible. His stomach was so distended he couldn’t breathe and had fluid
coming out of his nose and mouth with every breathe. It was close. It was around 11.50 when I
was sitting next to him and I noticed he stopped breathing. I quickly called out to my husband
and we both just held his hand and then he took one last breathe and he was gone.

My heart broke into a million pieces at that very moment.

He had a rough life but still through it all he always managed to give beautiful smiles. He is now at
peace and not suffering, running through the gardens of heaven. I thank God every day for
giving me whatever time I had with my son and also everything I went through with Musa. Yes,
that’s right I do say Thank you God, it was hard and heartbreaking but it taught me patience and
opened my eyes to a whole new world. Now with my experience and knowledge I wish to help
others. I know Musa suffered but his reward is greater in the next life being a perfectly happy and
healthy boy in heaven for eternity. I hope my son's story can help others in many different
ways, from comfort knowing you have been through similar things, to awareness of CMV and its
horrible things it is capable of.

I love you always Musa and miss you dearly xx

Submitted by his mom, Seemah