While about 50% of children with DS have some sort of heart condition, Jackson does not. However, because it is so common, I thought it was an important topic to cover. Because we don't have firsthand experience with this, some of my friends from my 2014 DSDN Rockin' Moms group have offered to share their stories. Thank you, ladies, for sharing your heart warrior stories with me!
"Soleyl was born with an ASD and VSD. She had OHS at 5 months. She recovered amazingly and was out of the hospital in 4 days. She never showed signs of heart failure prior or needed oxygen." - Shakyra Cora
**"I am not sure how common these are with kiddos with DS but here is her whole story. Let's start from the beginning, 2.5 years ago! She was born on feb. 20th, 2014. She was born at 28 weeks gestation and only weighed 1lb 7oz! She fought very hard, and we were released after 117 days in the NICU. She had an AVSD and had her first open heart surgery in Oct. 2014. She rocked it!
**She was then diagnosis with Pulmonary vein stenosis in all 4 of her main veins (narrowing veins that run from the lungs to her heart). This news was very devastating; it is pretty much a death sentence and can never be cured. Children's hospital of Colorado told us to make her comfortable and that there was nothing more they can do for her. So of course I wasn't going to give up on her that easy! I did a lot of research and found that Boston Children's had a specialist that could hopefully help Olyvia. We flew out to Boston in July 2015. They performed her second open heart surgery (way more intense and critical than her first). It was a very long and emotional 8 hour surgery! she went back to the ICU with her chest wide open just in case they had to get in there quickly. How many parents can say they saw there child's heart beating from the inside? We stayed a long 21 days at that hospital. She left there on a medication called Gleevec (a chemo drug); this medication is supposed to stop the growth of the disease in her veins. She was on that nasty medicine for a year! But you know what... her veins are now WIDE open! She is truly a miracle!
We thought all of her medical problems were starting to get resolved. Then back in April 2016 Olyvia under went a sedated echo to check her veins (gets them every 6 weeks) her heart rate jumped to 305bpm! They immediately woke her up and called and said we need to get to the ICU asap. They said they were going to cardiovert her (use the paddles and try and shock her back to normal sinus rhythm). They put her back under and started to shock her, her heart got really tired and stop beating! They then began to do chest compressions to bring her back. She was gone for over 2 minutes, but they were able to bring her back. She was then diagnosed with atrial flutter. From March 21st to August 7th, 2016, she has been flown flight for life to Children's THREE times because of her flutter! The first time her heart rate was back up to 300 and the doctors decided to put in a loop recorder (a small device that reads when her heart stops and/or when her heart beats way to fast and sends the information back to Children's). She was released fairly quickly and we were sent back home.
She then started to get a fever and her chest looked like it had a golf ball in it. We were then flown back over the mountain, and they took out the loop recorder and her chest was covered in a staph infection! At that time they were talking about a pacemaker but wanted to wait until she got bigger. She only weighed about 18lbs at 2 years old. We were doing pretty good at home, then we check her heart rate on our home pulse ox (which we check daily) and it showed her heart was beating 167bpm. Some of her chambers were double that! We then got flight for lifed the third time on August 7th. They decided to put a pacemaker in this time to help control her rate. They had to open her chest for the third time. The doctors put the pacemaker in her stomach. We were released in 2 days to the Ronald McDonald house to wait for her follow up appointment. Well, on the second day of her being released, she started to have a high fever again, and her stomach was bulging again. We took her to the ER, and they determined she had a hernia under where her pacemaker was placed. So they did emergency surgery that night. They didn't take out her pacemaker at that time. The doctors fought with us and wanted to try and save the pacemaker. Well she was still hospitalized with "big boy" antibiotics. She wasn't getting any better, so they decided to take out the infected pacemaker. (Thank God they did because her heart was very close to getting infected). Her chest then had to be opened for the fourth time!" - Kimber Chapman
**"Jack was born with two heart defects: AVSD and tetralogy of fallot. He was diagnosed in utero, and we met with surgeons and has a surgical plan before we even saw his cute face. He had open heart surgery at 3 months old and was hospitalized for 13 days. It seems like it was such a long time ago, because other than his zipper scar, there is really no sign of it. He is growing and thriving." - Sarah Milbratz
**"Benny had a complete Av canal defect, basically his heart was one big chamber. Our cardiologist was amazing, one of the best medical providers we talked to in the weeks following our prenatal diagnosis. He told us that this was the most common defect in both typical and babies with Down syndrome, and that the outcomes were very good. He said that babies with Down syndrome had an even greater chance of having a good outcome, statistically closer to 99% than the 97% of the total population whose surgeries went well. He also told us that he knew a lot of families who had kids with Down syndrome and that they seemed very happy and were some of his favorite people. I'm so grateful to this man for giving us a different perspective at a scary time when other medical providers were urging us to terminate and emphasizing all of the negative aspects of our diagnosis.
Our heart surgeon also turned out to be an angel in human form. Handing our precious baby over for open heart surgery was one of the scariest things we've ever had to do, and it was so much easier knowing we had such a great team. The surgery was about 6 hours, and Benny was in the hospital after for five days. His recovery went quickly, and now our only reminder is a little exclamation mark shaped scar on his chest. He has since been cleared by cardiology and will only need to have a yearly checkup with a cardiologist for the rest of his life, but it is anticipated that he will never need another surgery; his heart works just like anyone else's now! The difference from before the surgery when he was struggling to gain weight and suffered from congenital heart failure and pulmonary hypertension, to after the surgery when he gained weight easily and was healthy and strong...it was very dramatic and makes me so grateful for modern medicine and for our amazing heart team.
A lot of the statistics that we're given about the outcomes of people with Down syndrome include people who were not given this kind of medical intervention. Up until a few decades ago, medical care like heart surgery was denied to people with Down syndrome. So you have to understand that this is why the life expectancy for people with Down syndrome has increased so dramatically in the past few decades. So much has changed. The same is true of cognitive abilities and other health issues that you hear about. Now that we have better health care and modern medical technology, the outcomes for people with Down syndrome are so much better than they ever have been. At the same time, prenatal testing has become cheaper and more available, so fewer and fewer people with Down syndrome are being born.
This is why all of us parents with kids with Down syndrome are always shouting from the mountain tops that our kids lives are worth living. And they truly are." -Taymar Pixleysmith
For more information about Down syndrome and heart defects, check out this NDSS page.
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