Down syndrome. Two words I honestly never thought would be part of our family, but let me tell you something, I can’t imagine our life any other way now. Having a child with Down syndrome or any disability can and does bring about a mix of emotions. You get the diagnosis and you try to process it, you are upset, you mourn the future you had envisioned, but then you feel the unbelievable love that your child has for you, it’s a love that is so big that it’s hard to describe.
For some reason people feel the need to apologize when they hear we have a child with Down syndrome, but they don’t understand what a beautiful life it really is. I always tell people that there is nothing to be sorry about. I honestly wouldn’t trade this life for anything.
Our lives are filled with doctor and therapy appointments, but watching your child work so hard on meeting milestones, seeing the determination to achieve them and excitement on their beautiful little faces when they do is one of the most amazing feelings in the world and is worth every minute that is spent at an appointment.
Every day is an adventure and is mostly filled with laughter and smiles. On tough days, I know that my child is there with their unconditional love, contagious laugh and beautiful smile to brighten my day.
Having a child with Down syndrome has taught us so much more about life than I ever could have imagined. It has taught us to appreciate the small things, not to take things for granted, to stop and smell the roses more. You realize that your child teaches you so much more about life than you could ever teach them. They teach you about kindness, love and acceptance.
Now, don’t get me wrong, it’s not all rainbows and sunshine 24/7. We still have hard days. Days that we struggle and days that we just have a rough time. Honestly, though, the good days do outweigh the bad.
So, my advice to any new parent that receives an unexpected diagnosis: give yourself a few minutes to be upset, but don’t stay in that moment. Join a support groups, reach out to other parents, learn what you can and be your child’s biggest advocate. Then know that soon you will experience a love beyond anything you ever imagined. This love is unconditional and so pure. It will make you forget that you were ever upset in the beginning.
Since 2006, March 21 is recognized as World Down Syndrome Day. The 21st day of March signifies the genetic condition caused by an extra copy (three instead of two) of the 21st chromosome.
At The Children’s Hospital of San Antonio, we have the largest team of physicians and genetic counselors in the region. We work with families to help identify genetic conditions in both adults and children of all ages and help them find the resources they need to reach their full potential. If you are interested in genetic services, please visit our website www.chofsa.org/genetics.
When Vanessa found out she was pregnant with her first baby she was so excited. She began dreaming about her nursery and couldn’t wait to find out if she was having a boy or a girl. Vanessa decided early on that she would be using a midwife to deliver her baby and began attending her regular appointments. Her pregnancy was textbook in the beginning and she had a great 20-week scan with no issues. It was that day that she found out she was having a girl. She and her husband were so excited and decided to name her Luna.
At the start of her second trimester, Vanessa started noticing lots of swelling and weight gain. She had heard about a condition called preeclampsia, a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, most often the liver and kidney.
“Because I had heard about preeclampsia before, I was nervous. I told my husband that something didn’t feel quite right and asked him to get a blood pressure cuff. When he took my blood pressure, it was really high,” explains Vanessa.
Vanessa called her midwife right away who had her come into the office. While she was there her blood pressure thankfully went down and her midwife suggested a few natural remedies to keep it down. “She told me to watch it closely and to come back if I started experiencing headaches,” Vanessa added.
The next day, Vanessa started getting headaches and visited the ER at CHRISTUS Santa Rosa Hospital — Westover Hills, but nothing was showing up in her lab work that was concerning the doctors so she was sent home. At her regular appointment with her midwife on the following Wednesday, things were still looking good and Vanessa was relieved.
But, things took an interesting turn when Vanessa got to work on Friday, January 15. She went to work like normal at a skilled nursing facility where she is a speech pathologist. “I asked a nurse to check my blood pressure and it was really high. I didn’t leave right away. I know it sounds silly, but I wanted to get my COVID vaccine first. I thought I might just need to rest so I rested for a bit when I got home and then took my blood pressure again when I woke up and it was through the roof. So, back to the ER we go, but this time I packed a bag, just in case.”
And thank goodness she did. Vanessa and her husband checked into the ER at Westover Hills where they ran lab work. Right away, they saw protein in Vanessa’s urine which is a key indicator of preeclampsia. The doctors warned Vanessa that there was a strong chance she would be delivering soon and gave her the first round of steroid shots to help with Luna’s under-developed lungs.
“I was really scared at this point. Luna was only 29 weeks (gestation) and I knew it was too early for her to come,” said Vanessa.
Vanessa was immediately transferred by ambulance to The Children’s Hospital of San Antonio where they drew more labs as soon as she arrived. “This is when the bad news started and kept getting worse,” Vanessa explains. “I was hoping to be treated and released back home, but life had different plans for me and baby Luna over the next few days.”
At The Children’s Hospital of San Antonio, Vanessa met Dr. Brook Thomson, the obstetrician who would now be making sure Vanessa had a safe delivery. “I was considered a high-risk patient and Dr. Thomson was watching me closely,” remembers Vanessa. “By Tuesday, my platelets were too low and my lungs were filling up with fluid. All I remember him saying after that was, we have to get that baby out!”
It was at that point that Vanessa learned that Luna was diagnosed with Intrauterine Growth Restriction (IUGR), a condition where the baby does not grow as expected in the womb.
“Even with the IUGR diagnosis, they weren’t worried about Luna. It was me they were worried about,” explains Vanessa. “Dr. Thomson was very patient with me as I tried to decide if I should try to have a natural delivery versus a C-section. I decided on a C-section and I am so glad I did because there was a knot in Luna’s cord and my placenta was completely attached to my uterus. I’m so grateful things did not get even worse than they already were.”
Vanessa was not able to see Luna for 24 hours due to some of the medications she was on to treat the preeclampsia, but her husband would bring her pictures throughout the day. “It really meant so much to me that he was showing me her sweet little face. I was in a lot of pain and really out of it due to the medicines, but seeing her made it so much easier,” said Vanessa.
Luna is currently in the Neonatal Intensive Care Unit (NICU) at The Children’s Hospital of San Antonio and getting stronger every day. Vanessa and her husband switch off visiting her throughout the day due to the current safety policies related to COVID.
As Vanessa thinks back about the experience that made her a mom, she is grateful. “We couldn’t have asked for a better doctor than Dr. Thomson. While I wasn’t excited about having to abandon my birth plan, I knew I was in good hands,” explains Vanessa. “Dr. Thomson was so caring and made sure to explain in detail what was going on. I never felt rushed and I really felt like I was getting the care I needed. Thank goodness he was there to hold my hand through the entire process.”
Vanessa adds, “Every nurse I had from Labor and Delivery to all of Luna’s nurses in the NICU have been phenomenal. I kept telling my husband how lucky we were to be there. Even though they get so many different patients and babies, they still do their best to make you feel they understand your unique situation.”
Vanessa is looking forward to the day when Luna can come home which will likely be closer to her original due date on March 31.
“The fact that these teams were in place to lead me through my delivery and now my stay in the NICU has meant so much to our family. We are over the moon with joy and can’t wait to bring our little baby Luna home,” concludes Vanessa.