Written by Cheryl Brennan

So many emotions are coming at me as I sit down to write about my granddaughter Luci, and my eyes have already begun to water when I think of the journey that our family has been on since 2014, because of a terrible virus that none of us had ever heard of before.

At the time my daughter became pregnant, my two sons had already made me a grandmother four times over. I had fully embraced the title, and absolutely doted on my four grandchildren. But, let’s be honest, this time the person carrying the baby was my baby, and as her mom, I was so excited to be able to have a more integral part of the process. Sam and I have always been close, so it was natural for us to share this. Between her husband having to work, and the fact that she doesn’t drive, I was the one who took her to her prenatal appointments. The day she found out she was having a girl, her husband Rick met us at the doctor’s office from work, and they were so happy. She had been hoping for a girl.

Like her mom, Sam never really had morning sickness. She was very healthy, even though it was winter, and she was working at a daycare, where germs abound. Sam and Rick set up a baby registry at the local stores, and agreed on the name Luciana Lorraine. My older daughter Becky and I started to plan the baby shower.

Around the 16th week of Sam’s pregnancy, she came down with swollen glands, a scratchy throat, and fatigue. Since it was on the weekend, she went to an urgent care center, where the doctor said it was just a virus.

Weeks later, during a routine ultrasound, there was a question of whether or not there was evidence of an arachnoid cyst in Luci’s brain, so Sam was sent to Maternal Fetal Medicine at the hospital she would deliver at, to have a more thorough ultrasound. At that appointment, it was a relief to hear that there was no arachnoid cyst, but Sam was asked to make an appointment for another ultrasound in two weeks, because the tech hadn’t been able to get one of the measurements due to the baby’s position. She made the appointment, I took her to that appointment, and the same thing happened. Everything looked fine, but come back for another ultrasound, because, again, “ we couldn’t get a measurement that we need” due to the baby’s position.

At the next ultrasound, on April 11, at 26 weeks 4 days gestation, the ultrasound did not go as well as the others. Thinking back, it was kind of suspect that Sam was asked to come back so often for “more measurements”. I have to wonder if the techs and doctors had some inkling that there was a potential problem, and weren’t telling us.

This time, Sam was told that Luci was behind in her size, and they wanted to send Sam to Boston Children’s Hospital for an MRI and an ultrasound.

Now we were worried. Her appointment was made for her, and it was on Good Friday. She had to be in Boston at 7:45 a.m. As anyone from Massachusetts knows, getting into Boston during rush hour is a nightmare, so we had to leave early. Rick’s dad drove, and his mom, Rick, Sam, and I also piled into his tiny car.

It was a long day, as Sam was brought from one test to the other, the rest of us anxiously waited, and silently prayed. After all of the testing was done, our little group was ushered into a small conference room and waited for the doctors to give us their findings. It seemed as though we waited forever.

I will never forget that meeting. Two people, a man and a woman, eventually walked in and joined us at the table. The man was a neurologist, who showed us the MRI pictures of Luci’s brain. He told us that she was three weeks behind in her growth, and her head was four weeks behind. She had cysts and calcifications in her brain, which also was smooth…no folds. Her umbilical flow was not performing correctly, and her placenta was aging too quickly. He said her small head size was called microcephaly. He talked about the very real possibility of stillbirth, or prematurity, and that they couldn’t predict how delayed she would be developmentally, whether she would ever even walk or talk. We were so in shock, we could barely even think of questions to ask. The neurologist said that they were leaning toward some sort of virus as the most likely culprit, but wouldn’t know more without testing. Then he left the room. The woman was much more positive and supportive. She told us that babies’ brains can sometimes compensate and surprise everyone. She said, “It could happen.” I’m not sure what her actual title was, but I was so thankful for her, because she gave us some hope to hold onto.

I have to hand it to my daughter. She stayed positive, and refused to expect the worst. This was her baby and she just knew to believe in her.

Sam was told to go to her own hospital twice a week for ultrasounds, and told the signs to watch for that would prompt a call to the doctor. I had to take her to get a steroid shot (the first of two) to help Luci’s lungs to mature quicker in case she came early, and Sam and Rick were told what to expect if Luci was premature.

I was working as a paraprofessional in an elementary special education classroom, and, fortunately, had the following week off for spring vacation, which was perfect as I was afraid to leave Sam alone. She, of course, stopped working. So I spent the next week doing things with her everyday, and taking her to her ultrasound appointments.

On April 29th, during the ultrasound, first the tech, then the doctor, were unusually quiet. They soon let us know that Luci was in distress and needed to be born that day. Sam was admitted immediately, and given the second steroid injection. We called Rick, and he was able to get to the hospital before the emergency c-section. The surgeon came in beforehand to explain to Sam that she would have to have a classic c-section, which is not usually done anymore, because her uterus was still so small.

That day, April 29th, at 29 weeks and 1 day gestation, Luci was born weighing 1 pound and 6 ounces, 11 and ¾ inches long. And from the very start, she was amazing everyone. She did not need to be intubated. The doctors were so surprised. She was put on a CPAP first, then on a Nip-V. Her liver was enlarged, and she was put under the blue billirubin lights.

There hadn’t been time to test for a virus before she was born, but now that she was here, they asked for permission to test for CMV, or cytomegalovirus. She got the test when she was two days old, and the results came back positive the next day. Now we all knew what to blame. And we began to learn about congenital CMV, or cCMV, meaning she was born with it.

Things that we have learned about cytomegalovirus:

1. CMV is a member of the herpes family and can be spread by direct contact with an infected person’s bodily fluids such as saliva, urine, feces, blood, tears, and breast milk.

2. CMV is usually harmless to the general public. In fact, somewhere between 50-80 percent of people in the U.S. have had a CMV infection before they turned 40.

3. Once you have had a CMV infection, it stays in your body for life.

4. Congenital CMV occurs when a pregnant woman catches CMV for the first time during a pregnancy, and it passes through the placenta to her unborn child, causing birth defects and developmental delays.

5. Congenital CMV affects one in every 150 babies born each year (approximately 30,000 children annually).

6. One in every 5 children born with CMV will develop permanent health problems with as many as 400 infant deaths annually.

The StopCMV.org website states that “more children will have disabilities due to congenital CMV than other well known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/Aids.

Possible Congenital CMV Outcomes

* Hearing loss

* Vision loss

* mental disability

* microcephaly

* intracranial calcifications

* lack of coordination

* cerebral palsy

* feeding issues/Failure to Thrive (FTT)

* Sleeping, behavior, sensory issues

* Death (in rare cases)

Prevention

– very common among healthy children 1-3 years old.

– because of this, mothers, daycare workers, preschool teachers, therapists, and nurses have a higher risk of catching it

DO NOT share food, utensils, drinks, straws

DO NOT put pacifiers in your mouth

TRY to avoid contact with saliva while kissing a child

DO NOT share a toothbrush

WASH hands with soap and water for 15-20 seconds after : wiping noses or drool, changing diapers, feeding your child, or handling toys,

.

As a result of cCMV, Luci was born with IUGR (intrauterine growth restriction), thrombocytopenia (low blood platelets), jaundice, microcephaly, enlarged liver, hypertonia, and hearing loss.

We can’t be sure, but I suspect that Sam caught CMV at work, and we are pretty sure that her bout with swollen glands, etc., at 16 weeks, was CMV. The unforgivable thing, is that here in the States, obstetricians do not normally test their patients for CMV. Nor do they educate their patients about the preventative steps that could help ward off this stealth virus.

Luci spent 93 days in the neonatal care unit. The day her mom was released from the hospital was a terrible day. Luci was 5 days old, and Rick and I could not get Sam to leave her hospital room. It took us hours with many tears, to finally convince her that it was okay to leave the room. She went straight to the NICU.

Over the course of those 93 days, Sam spent every single day from 7:00 am until 10:00 pm with Luci, snuggling her, getting hands-on from the very beginning, taking her temperature, changing diapers, learning everything she could.

Since Rick had to work, and was saving his leave for when Luci could come home, I took a family leave from work for the rest of the school year. I would get there by 8:00 am, and stay till around 6:00 pm, when Rick got there after work. And before Luci left the NICU, I retired, because Luci was going to need many doctor’s appointments, and I wanted to continue being there for my daughter and granddaughter.

Luci not only had cCMV to deal with, but also the problems that come with being a micro preemie. Sam wasn’t allowed to nurse her, because since Luci had CMV, that meant Sam did, and the doctors were afraid that Luci could get sicker if she drank breast milk from her mother. We have since found out that there is much disagreement of that. So Luci received donor milk until she was two months old.

Life in the NICU was like living on a roller coaster. And I firmly believe that the phrase ,”two steps forward, one step back”, must’ve been coined in a NICU.

Luci had multiple platelet/blood transfusions, blood tests, head ultrasounds, I.Vs, eye exams, and xrays. She had apnea episodes, anal fissures, p.i.c.c. lines, a spinal tap, and feeding tubes. We had many scary moments when her numbers dropped, and we were also constantly anxious about her ANC. If it went below 1000, it was worrisome. If it went below 500, it was dangerous. It meant her immunity was terribly compromised.

She had a team of doctors from Boston Children’s Hospital following her progress and consulting, along with incredibly dedicated neonatologists at her NICU, and the neonatal nurses and other NICU staff who offered their tireless loving care to Luci and to us, her family. After spending so much time with them, the NICU people are like family, and we still keep in touch with them.

Despite the scary times, there were still many joyful moments. One of the things Sam and I share is a love of music and singing. In the NICU, we sang to Luci, and she seemed to thrive from it.

Also, I am an amateur photographer, and I would bring in my camera, and do little photo shoots of Luci, by herself, and some really sweet mother-daughter pictures.

From the day she was born, I’ve kept a journal about Luci. I felt it was important to document her story, and it was something that I could do for Sam. It’s amazing now to look back and read the details again.

luci-5

When Luci was 3 days old, 7 days old, and 3 weeks old, she had head ultrasounds, and a head MRI at 10 days old, that all showed the same thing. Her brain was still smooth with cysts and calcifications, and one ventricle was enlarged. But at 7 weeks she had a head ultrasound that showed folds forming! And the gyrations were looking “more normal”. Another head ultrasound at 9 weeks showed “ventricles no longer enlarged.”, and more ridges and folds were developing. In July, at 2 ½ months, a head MRI showed that she had many small folds, and she received a diagnosis of polymicrogyria. I looked up PMG, and found that the outcomes were similar to what we were told about CMV. Put very simply, we could anticipate developmental delays.

I have to back up a little here, and mention that one of the treatments for babies with cCMV is an anti-viral called ganciclovir. The recommended course of treatment is 6 months. Luci received it through I.V., then was switched to the oral version, valganciclovir, or Valcyte, for a total of 8 ½ months. One of the risky side effects is that it could cause neutropenia and thrombocytopenia, which is what brought Luci’s ANC dangerously low. There was one point during her NICU stay, where she had to be taken off the Valcyte briefly, was then given Foscarnet, another possible CMV treatment, then switched back to Valcyte. Because of that, even once she was released from the NICU, she had to have her blood tested regularly, and given neupogen shots to counteract that. Some people believe the benefits of ganciclovir outweigh the downside. It’s a personal decision for each set of parents who have a child born with CMV. Doctors feel that it can possibly halt or slow the effects of CMV on hearing or vision loss. I feel as though it helped with Luci’s brain developing folds. I may be wrong. I don’t know.

Luci was discharged from the NICU on July 31, at 3 months old, or 2 weeks corrected age. She weighed 4 lbs and 9 oz. It was such an emotional day. Sam had been with her every day, except for the one afternoon in June when she attended the delayed baby shower we held for her. She stayed for about 2 hours, and then rushed straight back to Luci.

As we were saying goodbye, many of the doctors and nurses who were there, remarked that they had never seen such a dedicated family and they believed that’s why Luci was doing so much better than predicted. I am just grateful that we were able to do that. I know many can’t because of their jobs or other children at home.

When Luci first came home, she had many doctors to see, including pediatrician, Infectious disease doctor, neurologist, otarlaryngologist, audiologist, optometrist, gastroenterologist, and a feeding specialist, and nutritionist. She still sees a number of those. Luci has been getting Early Intervention since she was 4 ½ months old, and eventually started physical therapy, occupational therapy, speech, and has a hearing specialist from a local school for hearing and speech.

One of the most common effects of cCMV is hearing loss, and Luci has been diagnosed with bilateral mild to moderate hearing loss. She has hearing aids, but won’t keep them in. We have been teaching her to sign, which she loves. And with her level of hearing loss, she can still hear music, which she still loves. She actually has a pretty good sense of rhythm.

Another very common problem that we discovered children with cCMV tend to have is feeding issues and slow weight gain. Luci developed reflux early on, along with vomiting, that has been an ongoing issue since shortly after coming home. Sam, along with the doctors and Luci’s feeding specialist, have tried many different strategies, reflux meds, and so on, to help her. She has silent aspiration, so her formula is thickened. She has oral aversions, so she is not eating solids. She is very sensitive and vomits easily. A year ago, Sam switched to a new G.I., and the G.I. put a nasal feeding tube in. Luci started gaining weight quicker. Three months later, Luci got a G-tube.

Today, Luci is over 20 lbs. She doesn’t talk, but she does make the vowel sounds for 4 words, up, yay, Pa, and hi. She knows many signs, and is eager to learn more. She doesn’t walk, and doesn’t even try to pull herself up yet, but loves when we walk her around holding her two hands. She scoots around on her bottom, and she’s pretty fast. She has always been very observant, and has always loved watching herself in the mirror. She is very loving, blows kisses, and actually “sings” along with me.

She has some auditory sensory issues. For instance, we can’t whistle around her. She will get upset and vomit. And we can’t afford for her to lose calories, so we try to avoid the things that will make her vomit.

From the day she was born, Luci has had a mind of her own. She knows what she wants and what she doesn’t want, and let’s us know. Sometimes, when she’s sitting on my lap, she’ll just give me this direct stare as though she’s looking deep into my eyes, then she’ll suddenly break into the sunniest, happy dimple-framed smile, like she knows the greatest secret – that I love her.

 

© 2017 All rights to this story including photos belong to the Author Cheryl Brennan published via SNUG (Special Needs United Grandparents).

 

 

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