Zachary - Texas
On October 13th 2008, it was just a month before Hurricane Ike hit Houston. My boyfriend proposed to marry me and we found out a few days later we were pregnant. It was the most shocking and happiest day of my life. When I just was a month pregnant I got real sick, coughing constantly. I was very worried about my baby but I didn't have an OB yet. I went to the family doctor and I got diagnosed with bronchitis. I was very scared to take any medications being pregnant I couldn't stop being worried about my baby.
On January 9th, 2009, I went with an OB/GYN, then I got all the standard lab tests, diabetes, toxoplasmia, hepatitis, triple screen, etc. They even told me about the TORCH test. Just a normal routine doctor visit. By that time I was feeling much better about my vomiting and the bronchitis was cured.
On January 12th, I got my first ultrasound, my mother in law was with me that day and they told us we were going to have a baby boy! He was so cute sucking his finger already. He just looked to be the most perfect being in the universe and I was fascinated for the miracle was growing inside me. We called my husband and he was very happy for the news.
On January 18th, I received a call from the doctor telling me the triple screen test came back with a Down Syndrome positive. I couldn't believe what I was hearing. The worst of all is that her call was very cold and she even gave me more details about the news. We were referred to a specialist in fetal medicine and genetic counseling.
My nightmare started before my baby contracted CMV.
On January 21st, we went with the specialist to get a Level 2 ultrasound. The doctor told us she couldn't find any "marks" that indicate the lab result. She said an amniocentesis would be more accurate way to know if our baby would come with any genetic problems and if so we would still be in the frame time to "terminate" the pregnancy. I couldn't keep in my mind how some doctors can be so cold and talk about a life like if they are terminating a contract. My husband and I thought that we would have this baby no matter what or how he was coming so we decided not to have the amnio. We got a second appointment. All my family gave me an incredible support and my baby received so many prayers and blessings from everybody. In my heart, I knew that my baby was going to be okay.
On February 24th, four days before my birthday, we went again with the specialist. I was 22 weeks pregnant and after a long level 2 ultrasound the doctor concluded that everything seemed normal. She decided it was not neccessary to have a 3rd appointment. My husband and I were very happy and much more content for the news, our baby was going to be fine and healthy. We praised the Lord. We continued with our normal lives and my normal check ups, but one day something got in my head that I wanted to have another ultrasound, I wanted to see my baby one more time before birth, I don't know why. I just needed to see him again.
On April 25th, I had a regular check up. The nurse was asking me if the baby was moving regularly. I responded that he wasn't moving too much anymore (I lied about it). Of course my baby was moving, but I just needed to get another ultrasound and the doctor was not going to perform one more if I wouldn't LIE ABOUT IT.
On April 27th, I got an extra ultrasound and the technician was very quiet and she didn't say too much. You could feel that she was looking at something wrong on the screen. She went to get the doctor (that wasn't the doctor because almost all the time the certificate MIDWIFE attended me most of the times). She walked in the room and told my husband and I that it was something abnormal. They detected it was an excess of amniotic fluid, that I should have 22cm of amnionic fluid and I was over 6cm. Also they told us that the baby's limbs seemed to be behind about 2 or 3 weeks and the head looked too big. They concluded that he wasn't swallowing the fluid. We were referred to the specialist again. I was in tears again...
On April 30th, in the specialist office they did again the level 2 ultrasound. The technician again spent alot of time taking the measurements and shot to the doctor to see before the doctor came in. The technician mentioned his HEART looked a little bit to "thick". After a while the doctor checked the frames, she again mentioned about the heart. I had no idea what she meant by a "thick" heart. She didn't say it was life threatening but also she mentioned that the limbs looked too small by his gestational age. Conclusion was our baby might be a dwarf. Now we were referred to have the baby in St. Luke's Hospital and get the baby to Texas Children's. We were referred with another specialist on fetal medicine at Baylor College. By this time I was mad at the doctor. I started to think she didn't know what she was talking about and everything was a scam to get more money from out insurance...
On May 6th, we went to see Dr. Johnson at Baylor College. He performed more ultrasounds and finally it seemed like he saw what was the real problem with my baby. Doctor Johnson said there was nothing wrong with the heart or at least it's what the ultrasound showed. We asked about the limbs, we still had the idea our baby had Down Syndrome or dwarfism. He said "Forget about the limbs or the head or the heart. What this baby has is a extremely large liver and spleen. It's three times bigger that normal size." What??? Where did that come from?? Liver and Spleen???? What NOBODY else mentioned before???? What did this mean??? I couldn't think anymore, I was about to lose it. So he suggested have the amniocentesis and this time I agreed to have it. I was so tired to have heard so many different diagnoses, I was sick to my stomach and totally mad. He also referred us with the cardiologist to be sure about his heart.
On May 7th, the cardiologist told us "this baby won't have any problems with his heart." That was a HUGE relief.
On May 8th, it was my husband's birthday. We were in Baylor waiting for the amnio results. So the doctor came and said, "Well, we have good news and bad news. Good news is nothing genetic which is a good thing, baby is not coming with genetic problems. Now the bad news is the baby contracted CMV." We thought well if it is a virus, all viruses are treatable and he decided to put me on treatment and see how the baby would respond to the treatment. Before we went home the doctor warned us, don't google about CMV because you only will find bad things. In the meantime the social worker told my sister in law that we have to be maybe prepare funeral arrangements for the baby...that he might not make it.
On May 9th, at 7:00am, my husband and I went to St. Luke's to have the treatment via IV and monitor the baby closer. I was depressed and confused. I didn't know what to think anymore. I was shaking the entire morning and thinking where did I get this virus, what I did wrong. I couldn't believe what was happening. All the care I had, I never drink or smoke. I was very careful with my food, with my environment, taking all the precautions and I got CMV. When, how, where this happened. Why I didn't feel a thing. Why the doctors missed this diagnosis and most important WHY I NEVER HEARD ABOUT CMV.
After several hours receiving the treatment and monitoring the baby very closely, the doctor saw the baby might have anemia and told us. "I'm glad you haven't eaten anything because you are having this baby today."
Zachary William Smart was born at 16:53hrs on May 9th, 2009 via emergency c-section weighing 4lb 14oz and 17 inches long. When they took him out, I heard him cry but I couldn't see him. They took him immediately to Texas Children's NICU. I saw my baby in the recovery room with tubes and cables all around him, red spots all over his body, but to me was the most beautiful baby I ever saw. Then we were introduced to Dr. Gail Demmler, which has been a blessing for all of us. Zachy is in the best hands. She gave us information about CMV and the network. I was still very sad and nervous about my baby's future.
Zachary had an enlarged liver and spleen, low platelets, jaundice, no brain calcifications, visual exam turned okay and first hearing test was inconclusive. Zachary received several platelet transfusions and immediately he started on Gancyclovir. They performed a second hearing test. I couldn't hold my baby until after 10 exhausting days and it was heartbreaking to see him with all the tubes and cables hearing the beeping of the monitors. It was a horrible experience.
On June 3rd 2009, Zachy's hearing test showed he had profound hearing loss in the right ear and severe on the left. He was going to be deaf.
Zachy spent 2 1/2 months in NICU at Texas Children's. We were going to see him every day driving 50 minutes to downtown Houston, but I felt incomplete without my baby. Zachy finally went home on June 22nd, weighing 8lb 7oz.
Zachy has troubles gaining weight, he has bad reflux and still needs the feeding tube. At first he didn't want to take the bottle but after a little bit, he takes his bottle good. He still has the jaundice and now he is on Vanganciclovir and liver and reflux medicine. After a new ABR, he just has mild hearing loss in his left ear. We pray to God that stays that way, but even with his growing problems, he has overcome all the problems. He is a strong little man, loves to laugh and he is very smart. We are blessed that our little boy is doing much greater that the doctors expected. Praise the Lord!
I just wish the doctors would have told me about CMV or that TORCH tests become the stardard test for pregnant women. This is so preventable that I can't believe none of the CMV moms knew about CMV.
The first 6 months was very difficult for everyone. Zach had difficult gaining weight. He had an Ntube for 5 months, severe reflux, his liver enzymes and function were not normal and he stayed on liver and reflux medication until February 2010. He would not drink from the bottle and due to reflux and tube, he could not play normally. His CMV levels were up so he had to stay on Vanciclovir. His left ear is still mild loss and right is severe. His plateletes are still low and haven't been on normal range yet. He still can't eat solids yet but he is starting to eat better.
Zach is in PT, OT, and speech. He has improved a lot on motor skills in the last month. He can roll over with no problem, he just learned how to sit with no support. He can stand up in the walker which he loves and loves to watch singing time and sesame street. He still can't crawl, walk or cruise yet. I don't know if he just needs to catch up in growth and motor skills or if he will have learning problems in the future. But it seems he's a very smart and happy little guy, he is very strong and brave. We are so blessed for first year, but he had overcome many obstacles and even his doctors are very pleased with his progress... But he had more ahead, good and bad. But hopefully God will keep blessing him and with support of my amazing husband Troy, family, friends and doctors, StopCMV.org, and all CMV mommies who also inspire me to keep going. He will keep progressing and doing what he does best...amazing me!!
UPDATE: This is my son Zachary. Today is his 2nd birthday. Zachary has overcome many obstacles, we battle with liver problems, palettes, failure to thrive, reflux, bilirrubin, profound hearing loss in right ear and mild in left. The same CMV virus has took a while to control after birth, he was on NICU for 3 months with a 10 week of Ganciclovir treatment, he was on Valciclovir treatment for other 4 months more. He has delays (about 9 months) but he is catching up. But still has been a lot of work, tears, triumphs and failures. When Zach turned 1 year old he couldn't sit by himself, he couldn't crawl, or eat and walk. He learned to do all that in a matter of 10 months. Miracle after miracle after miracle. Zach is the most strong person I know...because like I said before...he still keeps amazing me day by day...
It is very likely Zachary will lose his hearing totally and we will have to get a cochlear implant, but thanks to God and all the people that have been helping me and helping him to get where he is now. Special thanks to his therapist, Janine, Dr. Gail Demmler, we love you! And Dr. Raid, family and CMV family! Today I can say Happy Birthday Zachy. I love you so much, my baby boy...2 years back I didn't know he was going to live.
- Shared by his mother, Malena