Premature baby with carer

Congenital Cytomegalovirus

“My Story” begins in September 2006…

My partner and I decided to start trying for a baby in September 2006 but we officially started in October 2006. When my next period due date started getting close I couldn’t help but do a test about a week before I was due. When it turned out to be negative I was stupidly devastated. It was completely unrealistic of me to have thought it would happen that fast. So I then assumed it would happen between then and my next birthday which was in the month of April, half a year away.

On the day my period was due in December 2006 I waited all day but nothing, so I did a test at about 10:00pm. When two lines showed up I was completely shocked and didn’t think it was real, that it was a mistake. I did another test during the wee hours of that night which also turned out to be positive. Since I had been getting up every few hours to pee anyway, I did a third and final test and surprise, surprise, POSITIVE!!! I was still in doubt so I had a test done at the doctors to confirm it and that too was positive. Turns out I was 4 weeks pregnant already!!! After finally accepting that it must be true I starting thinking back over the last few weeks and how my breasts seemed to have enlarged and were quite sensitive and how often I had been going to the loo not to mention that I had been more tired than usual…

I wanted to wait a week or two before telling my partner so that I could tell him on his birthday but the shock of falling pregnant so soon made me very emotional and I couldn’t stop crying. I had had a friend come meet me at the doctors and when she dropped me home and my partner opened the door, I simply burst out in tears so I obviously had to tell him!!! He was as shocked as I was but of course we were happy.

I had my first check-up at 9 weeks and my first ultrasound at 12 weeks to see if my baby was at risk of Downs Syndrome. The results from the scan were 1 in one-thousand-and-something so I wasn’t at risk.

We found out we were having a boy at my 19 week scan and we were absolutely over-joyed because that’s exactly what we were hoping for!!! This scan showed that my placenta was lying low, just less than 2cm from the cervix so I was scheduled for another scan at 32 weeks. Before that scan I had had some bloods done, one of which came back border-line for Gestational Diabetes so I had to have another test. This test was clear, I didn’t have it.

My 32 week scan showed that the placenta had corrected itself but that the amniotic fluid was a little low and also that he was the size of a 31 week old so he was one week behind. I was scheduled for yet another scan for when I was at 34 weeks but I never made it to that scan…

I had first started feeling Kaiden move at around 15 weeks and I started showing at about 19ish weeks. In all I only gained 4kg before he was born. I went from 63kg to 67kg in 34 weeks and one day. Generally Kaiden had had alternate times of being hyper active where I could see him moving, to times when he was quite quiet so when one week I noticed his movements had reduced quite a lot I thought that maybe it was because he was getting bigger and more cramped. I mentioned it to my midwife and she told me to come in just to be on the safe side.

I arrived at the hospital and was hooked up to a machine that monitors the baby’s heartbeat and movements. This showed that his heartbeat was perfect and also that his movements were normal. She said that maybe he was in a position in which I was not able to feel his movements or that my placenta was at the front and therefore I couldn’t feel his movements through it. I went home satisfied that everything was going fine and that my baby was completely healthy… I was very, very, very wrong.

A few days later I experienced a day with absolutely no movements whatsoever. Even though his movements where less frequent over the past week, I was still feeling them a few times every single day. So when I felt nothing, I got worried and called the midwife again. Again she told me to come in.

I was hooked up to the same monitor as before and it showed that his heartbeat was fine but in the hour or so I was there he did not move once. She went and spoke to a colleague and came back and told me that I needed to go to the hospital in which I was originally supposed to give birth in. She said she wasn’t sure but that I should pack an overnight bag just in case they wanted to monitor me overnight.

When we got there I was again hooked up to the same monitor which was showing the exact same thing. I was then given an ultrasound which showed his heartbeat was normal, he wasn’t moving and he was doing practice breathing movements which meant if he had to be born he would be able to breathe on his own. The ultrasound also showed that the amniotic fluid had dropped even lower and there wasn’t much surrounding Kaiden. She told me that she would monitor me for another half an hour and if he hadn’t picked up I would be having him. I said, “What, today?” and she said, “Yes, this afternoon”.

Well they never waited that half hour, the next person to come in was the anaesthesiologist asking me to sign consent forms for my impending emergency c-section. It was explained to me that they didn’t know why, but he was in distress and they had decided the only option was to get him out as quick as possible.

From the time I first arrived for the first check at the first hospital until the time I was wheeled into the operating theatre was about 3 hours, they wasted no time. That should have been the first sign for me that something was seriously wrong but I was so naive and just thought that he would be born a little early but that he would be completely fine. I had no idea how wrong I was.

Kaiden was born at 4:21pm on July 4, 2007. Independence Day (in America), he weighed 1.76kg (3lb 14oz).

He was popped up over the top of the screen for a split second so I could see him and then whisked away to be examined and cleaned up. I felt like I waited forever before I heard him cry out. At that moment I thought that it was all ok.

I’m not sure who said it or when it was said but I heard, “They think he may have a virus because he has a rash over his body”. I began to worry a little at that point. Kaiden was taken away to the NICU department while I was stitched up. I wasn’t allowed to leave recovery and go see Kaiden until I was able to move my feet and legs again. It took ages till I could lift my leg off the bed, I think more than an hour, maybe two, I can’t remember. I don’t remember finally being allowed to see him; I can’t remember it at all. I don’t remember whether I was wheeled in on the bed or in a wheelchair, I can’t remember what I said or thought and I barely remember how he looked back then without looking at photos.

We were told by the doctors that they thought he had Congenital Cytomegalovirus due to his enlarged liver and spleen, low birth weight, extremely low platelets, rash, jaundice, the bleeds in his brain, calcifications and the fact that he had stopped moving. We estimate I contracted the virus at around 30 weeks from Kaiden’s father, Chris, because he had been sick at the time and I had not been in contact with anyone else’s bodily fluids; which are how it’s spread.

We were sat down and told about the virus and given a run down on all the outcomes and what problems Kaiden had. Never once did they mention there was a chance he might die even though I continually asked daily. We found out about a month after he was born that the doctors had never expected him to live. His platelets were at a dangerously low 9000, normally they would be from 150000 to 200000. This is why he had the two bleeds in his brain, one a type 2 and the other a type 3. In all Kaiden has had over 25 blood/platelet transfusions and in the earlier days they hovered in the mid/low twenties and sometimes even lower. I stayed in the hospital for 5 days and throughout that time we were constantly asked over and over, had we been in to see him? Told we should go up and see him as much as possible and that he was “A very sick baby”. Looking back I can see that they were probably doing it because they thought he would die and we would have forever regretted not spending as much time by his side as possible.

He was put on Prednisolone which is a steroid when he was about 8 weeks old and that improved his platelet levels immensely!!! They steadily picked up, going from twenties to the thirties, then forties, to seventies, nineties, over a hundred thousand and now they are normal. This had all happened in only 8 weeks which meant his horrible yellow colour from the jaundice faded away and he is now a healthy, normal baby colour. It was so weird seeing him change colour because all I’d ever known was the yellow so to me the healthy colour looked sickly!!! I’m used to it now but I still have moments of thinking, “Gosh, he’s really pale…”.

Kaiden stayed in NICU for only two weeks, he was breathing on his own at birth but they put him onto the ventilator just to help him out. After about 9 days he was put onto CPAP which was only there to help him if he needed it, otherwise he was breathing completely on his own. With all these tubes being stuck down his throat he wasn’t able to cry so when he came off of CPAP after only a few days he began letting out his first tiny, weak little whimpers. They were just so cute and I loved hearing them because it meant he was getting stronger and using his lungs.

He had Pneumonia in one of his lungs at one point but it was mild and cleared up pretty fast. He was receiving transfusions roughly every 3 days around this point. It increased to every 4 days when he went into SCBU.

In SCBU he wasn’t gaining weight well, it would fall off as quick as he put in on so they did some blood tests. We found out he had Diabetes Insipidus caused by damage to the Pituitary Gland at the base of the brain (caused by the bleeds/calcifications). The Pituitary Gland is responsible for releasing hormones for various functions within the body. In Kaiden’s case this meant that he was lacking in a hormone which allows you to gain and keep weight. This was easily fixed by administering a hormone replacement which was given by squeezing a few drops into his nostrils. He grew out of the Diabetes Insipidus in around a week and he’s never had problems gaining weight since. So far that is the only damage we know of caused by the bleeds in his brain but only time will tell if there are to be any more to come.

I didn’t like SCBU much at first because he didn’t have just one person looking solely after him like he had had in NICU, he had one person who was looking after not only him but at least 4 or 5 other babies as well. We were totally isolated in a little room to ourselves in a corner of the SCBU2 unit (there are 3 units and unit 2 is where they focus on feeding so that the baby can go home. So he went from intensive care to half way home in just two weeks!!!). He even had his own shelf in the fridge for my breastmilk. We felt completely shunned and like he was the biggest threat, like an atomic bomb or something. Whenever someone came into his little room they had to first wash their hands, use an anti-bacterial handwash, put on gloves and then put on a plastic apron. Upon leaving the room they had to throw out everything they had used, wash their hands and use the anti-bacterial handwash again. All his nappies were put in a bin with a “Caution!!! Hazardous Material” bin liner. Everything that entered that room was not allowed to leave again, he had his own monitors, scales, chair for us to sit in, pillow for feeding, nappies, wipes, creams, sheets, nests (the bed thing they are put in to keep them all tucked up like in the womb), clothes, etc. The sheets and the nests were all supplied by the hospital and they would supply little tops for him as well but they made us take them all home and wash them. We felt so contagious and isolated, it was horrible. We were treated as though we had the Bubonic Plague or something and that just looking at us would put you at risk.

So as he steadily improved he came out of his incubator and was breathing normal air, regulating his own body temperature, gaining weight, becoming stronger and stronger and on the whole doing remarkably well considering no one expected him to survive.

The first time he came home he was really unsettled and cried constantly. We couldn’t handle it and ended up taking him back to hospital where they found his left Hernia was coming through. That was corrected via an operation which he recovered from without a glitch. We took him home again after about a week or two. Same thing happened again. So we called and said he was acting as he did when his first Hernia came through, as with the first time it happened, we were again told that it was just colic and all we could do was comfort him. We insisted it was something more and they finally gave in and let him be brought back in. It was just before he went back into hospital that we found out he had mild/moderate hearing loss in his left ear and profound loss in his right ear. Over the next couple of days I went off the rails. I came home crying uncontrollably one day and it just escalated from there. I could no longer handle hearing him, seeing him or being anywhere near him. They diagnosed his second Hernia around this point and so he went back into hospital to have it operated on. During his stay in hospital I sought professional help for the way I was feeling and was diagnosed with Post Natal Depression, put on Zoloft (anti-depressants) and started seeing a Psychiatrist. They couldn’t figure out what was wrong because there is no way to diagnose a Hernia until it pops through and you are able to see it. So when they wanted to release him again we decided it would be best if he stayed with Chris’s mum so that I could focus on getting better.

After about a week his Hernia was picked up on at a check-up so he went back in to have another surgery. I decided I was ready to try bringing him home at that time and he’s been home ever since!!! It was still tough in the very beginning but as each day passed I began to love him more and more and enjoy spending time with him. Now we have this amazing, unbreakable bond. He settles best when he’s with me and he stares at me constantly, never looking away.

At his last check-up (at 8 months of age) his weight was over 8kg, he’s been off all meds for about 5 months now and he is practically a completely normal baby!!! Looking at him you could never tell what he’s been through or that there was anything ever wrong with him. His liver and spleen are still enlarged but that will improve in time. He is considered to be thriving and has no problems with his feeds. Unlike most CMV babies, he has never had any trouble feeding. The first time I tried breastfeeding him the nurse said he wouldn’t do it because he was too weak. Well he didn’t do it that day because he was too tired and wouldn’t wake up enough. The second time I tried he latched on straight away and sucked well. I wanted to try again for his next feed but I was told he wouldn’t do it because he would be worn out from the first time and that I should wait to try again tomorrow. I didn’t agree and tried him… He sucked HARDER and LONGER than the first time!!! He has proven them all wrong at every step of the way and I am so proud of him!!! He has obviously inherited my stubbornness!!! They also said that he would end up going back into the incubator because most babies did, they just couldn’t regulate their body temperature on their own but we never laid eyes on that hideous contraption ever again. The bleeds in his brain have been re-absorbed back into his body and so far he is hitting all his milestones and interacts just as any other normal baby would.

He was fitted for his hearing aids at about 4 months and he has Speech Therapy for an hour once a week at The Cora Barclay Centre. There is a chance his hearing could deteriorate but if it does then he will get the Cochlea Implants. Either way, he will be able to hear and we are confident he will learn to speak. We have chosen to focus on him hearing and learning to talk as opposed to lip-reading and signing. We don’t see that there is any reason he shouldn’t be able to talk, it just may take him a little bit longer to learn.

His doctor has told us that he thinks there is a high probability that the only problem he has will be his hearing and that there is no reason why he shouldn’t be completely normal from here on in. This is the best news I’ve ever heard because he went from being classed as being on death’s door to only having a minor hearing problem (well minor in comparison to some of the other possible outcomes…). We are thrilled to know that he may only be hearing impaired, it’s such a much better outcome than we ever thought possible but we do realise that he could indeed develop more problems as he gets older. That’s the thing with CMV, it’s just so bloody unpredictable and no one ever knows what will happen. There are no tests, no scans, nothing that can tell you the future.

For now we are just so happy that he is here at all, another week or so in the womb and the outcome would have been drastically different.

We were told after his birth that he faced Cerebral Palsy, Autism, Deafness, Blindness, Developmental Delay, Retardation, etc. but all he has is some hearing loss, a more extensive test showed his actual loss is profound to his right ear and moderate/severe to his left. He hears from 65 decibels in his left ear, which means without hearing aids he can hear a normal conversation, it would just be softer to him. His Speech Therapy is going great, he says “Ba, Ma. Da, Ga” and even tries to say “Meow”!!!

He is now 9 1/2 months old, 7 1/2 – 8 months corrected. He is developing normally and he’s such a wonderful, happy baby!

If you want to know more, you can check my CMV Awareness page

Thank you so much for reading this, I hope more people realise that CMV is a devastating virus, its the second leading cause of mental retardation, second only to Downs Syndrome and the leading cause of hearing loss in children!

Please check my page for more info, this is a very serious virus that needs to be made more publicly known.