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Yes, my child has Down syndrome. STOP saying ‘sorry’ – Olivia Corso



Background

My name is Olivia Corso, I married my husband Joe on Halloween 2015. Just like most couples we couldn't wait to start a family together, especially after losing my dad a year before our wedding. In January of 2016, we found out we were pregnant with our first child together. My husband has a daughter from a previous relationship named Bianca, who was about 12 years old at the time we got pregnant. Of course, we were all so ecstatic about having a baby. I was 26 years old at the time so a lot of my friends (including Facebook friends) were having babies that same year. The pregnancy started out like any other, I got the confirmation from my doctor and got to see and hear my baby’s heart beat for the first time - which was amazing and surreal. Towards the end of my first trimester, the doctor asked me if I would be interested in doing any prenatal genetic screenings for the baby, and it came with an extra ultrasound as a bonus! Of course I said yes, I wanted to get the extra ultrasound so I could see my miracle growing inside of me. That is when my whole pregnancy got turned upside down.

The probability tests & the 'I’m sorry' I went in for the NT scan(Nuchal translucency), it tests the pocket of fluid behind the baby's neck at a certain gestation which, if the fluid is large, can be a sign of a genetic abnormality. I also got a blood test to test my Pap-A and my HCG levels. The doctor at the ultrasound said that the fluid behind the neck was on the high end of normal but with my age being only 26 it should be fine. So I got the blood test and went back to work. They said they'd call me within a week with the results. I went on with my normal routine and got the call while at work one day, “I am sorry your child has a 1:10 chance that it would be born with Down syndrome.” Based on the high normal fluid, my PAP-A levels being so low and my HCG levels being so high. But again, this was only a screening, which just gives you a probability. It's not a diagnostic. The way the results were delivered to me by the genetic counselor was as if they were the worst news in the world. Of course, I kept calm on the phone but I immediately began bawling my eyes out at work the second I hung up. I continued to remind myself it was just a screening and got the non invasive prenatal testing (NIPT) done, which is a blood test that helps doctors determine the risk of the baby being born with a certain genetic abnormality - it has around a 99% accuracy rate in testing for Down syndrome. I told myself, “I will get the results and all will be normal." I got the phone call less than a week later with the genetic counselor on the line saying, “I am sorry, your blood test came back positive for Down syndrome.” Once again, I kept calm but when I am read results in such a gloomy way - as if you were being told your baby would die or have cancer. As if Down syndrome was the worst thing that could have happened to my family, how could I not start crying?


The decision to make..

Immediately after the genetic counselor read the results she said, “would you like to schedule an amnio so you can decide if you would like to continue with your pregnancy?” My mind was racing, I was scared, sad and mad that this woman was implying my child not be worthy of life which made me feel like my pregnancy was worth less than other mothers. I told her I needed to talk to my husband and we would go from there. After that phone call, every time we went in to the high risk OB for anything they would push an amnio on me. The way the genetic counselors treated my pregnancy made me feel like I was carrying a monster. I was looking on Facebook seeing all my high school classmates at the time pregnant with their perfect babies and everyone being so happy about it, and I felt like my pregnancy was something to be ashamed of. The way I was first exposed to Down syndrome made me very depressed. I was told by a genetic counselor, “well your life will be really, really hard if you decide to keep this baby.” And my response was always “no it won’t because I will do whatever I need to for my child.” I got phone call after phone call from genetic counselors pushing the amnio, so that I could make my decision on continuing or eliminating my pregnancy, as if they were saying I should kill my child if it has Down syndrome. Finally, I went ahead and scheduled the amnio mostly out of pressure. I went in that day like I was walking into my own funeral, my head was hung low and I probably looked like a homeless person in my baggy clothes with my husband by my side. I got prepped for the amnio and as the doctor was just about to insert the needle into my stomach and I yelled, “STOP!” I could not go through with it. I loved this child, which we found out was a little girl. I said to the doctor, “I don’t want this amnio, it does not matter to me and the results would not change my mind. I am not willing to risk the health of my baby to find out information that will not make a difference to me.” I was hysterically sobbing, I felt like I had to fight for this little girl’s life with the doctors. They said okay and sent me home, but I had to go to a pediatric cardiologist to get a echocardiogram of the baby’s heart to see if she had a heart defect since they are so common among those who have Down syndrome. I made the appointment for the echocardiogram. The day came, and man was I nervous! This was the moment that would determine if my child would end up needing open-heart surgery after birth, and what the overall health of my child. I remember sitting in the waiting room so anxious and going into the bathroom and standing their praying to god and all my angels up in heaven, please just have her be healthy. I went into the room and of course the baby didn't want to cooperate, so we ended up being there for 3 hours. At the end of the appointment we were told she had a perfect heart and that we didn't have to be seen again (sigh of relief!). Thank you god. I would have been fine with any findings, but knowing that was one less worry was a big relief for us.


The mixed emotions & more 'I’m sorry'

I went on with my pregnancy knowing there's a high chance my child would be born with Down syndrome. There were definitely bad days for me where I couldn't get out of bed. Days I would even see my husband with his daughter Bianca and think, why can’t I have a 'normal’ baby? I was so hard on myself like this was the worth thing, I didn't want to tell ANYONE because the people I did tell the reaction was awful. It was the same “I’m so sorry,” as if me being pregnant was something I should feel sorry about. I cried a lot more than I probably ever have in my entire life and I was on Google, which was not a good decision (never Google!). It was all outdated negative information about Down syndrome, which I admit I was very uneducated about. I had this stereotypical idea in my head and I was ignorant just like most people I have met since. So after all the depression, mood swings, emotions and constant doctors appointments, I found out that my daughter had started to stop growing inside my uterus and they had to keep a really close eye on her. I got pulled from work and put on bed rest with OB appointments everyday with ultrasounds and non stress tests to keep a close eye on her. On Friday, September 2, 2016 at 9:00 p.m. while laying in bed watching Gossip Girl on Netflix and eating grapes, which as a huge craving of mine, my water broke. I told my husband it was time and we went in, I had minor cramps at the time so everything went pretty smooth at that point. The nurse came in and said that they were all curious because I guess I was the youngest person with a possible Down Syndrome diagnosis they have seen, she said it in a way that was not offensive but just as if they were as curious as I was.


The delivery

They confirmed my water broke and hooked me to a monitor and let me labor through the night on my own, and I got a steroid shot in my butt to help develop the baby's lungs since I was only 34 weeks. I was up all night on the medicine ball, bouncing, trying to get her low to make this labor progress and I can finally meet my daughter and get answers of her actual diagnosis. In the morning, the contractions were a little stronger but I wasn't really progressing on my own so they gave me Pitocin to help move things along. Now let me tell you, Pitocin is no joke and those who have had it will most likely agree with me. After being on piton for about 6 hours, I was in excruciating pain and the back labor was so bad I didn't even get a break to catch my breath. I tried the laughing gas, which did nothing. So I finally asked for the epidural. I got the epidural and found out that I have scoliosis which made the epidural also not fully work, YAY! But it was definitely enough of a relief that I could relax and watch movies. I could not sleep at all! My adrenalin was going crazy, all I wanted was to meet my baby. Later in the night, even with the epidural, my pain worsened so the anesthesiologist came in to check the epidural. He discovered it was only working on my legs at the time, they put in a little more and the pain lessened but was definitely still there and my legs were mush. All of a sudden I got the pressure in my butt, it was time to push. The nurse said, “lets do a trial push since it is your first baby, and usually it takes a while.” I put my legs up, my husband holding one and the nurse holding the other. I then heard “STOP!” The baby's head started to come out. So she ran to the door, yelled down the hall that she needed a doctor. My doctor of course was delivering a baby at the time so I got this nice woman from another practice who came in to help with my daughters delivery. Once she was there it was about a push and a half and “waahhhhhh” my daughter came out screaming. They put her on my chest and immediately she lifted her little head and looked right at me. It all happened so fast that I was in shock.The doctors originally told me that they didn't know how healthy she would be. They took her off my chest to examine her, and brought her back to me. I was told she was doing great and that I was able to have about an hour with her before they needed to take her up to the NICU. At that time, I was intently examining her for all the birth Down syndrome markers that I had googled while pregnant, which I didn't really see any and was able to breast feed her. She was so cute, we named her Scarlett Adele Corso and she weighed 4 lbs 10 oz. She was perfect. After our skin to skin and time together, it was time for her to be taken up to the NICU and her dad went with her. I stayed in the room to recover a little and once she was settled, my husband came back down along with a doctor from the NICU. She said that Scarlett did have markers for Down syndrome but they could not say for sure until we got her karyotype of her DNA results back. We rested that night to continue my mommy duties. The next morning when I went up to the NICU, the same doctor approached me and said, “After watching her all night I am not sure that she has Down syndrome and if she does it is probably mosaic.” Mosaic Down syndrome is when there is only an extra copy of the 21st chromosome in some of the DNA, not all of the DNA it sometimes only effects certain things and features of a person.




The Official Diagnosis

They had a doctor come in from the Mass General Down Syndrome Clinic to examine my daughter. He said that she didn't have any signs at the time of birth. We were baffled, does she have it or not? We really didn't know. She spent her time in the NICU only because she was so small and was unable to keep warm on her own, so she needed an incubator to monitor her temperature. Besides that, she was extremely healthy. We had a cardiologist examine her while she was in the NICU and said that her heart was perfectly healthy. Everything was going great and I was spending day and night at the hospital to bond with my little angel. After about a week and a half in the NICU, her DNA results were in. The Doctor came into the room and told me, “I am so sorry, the results came back that Scarlett has trisomy 21 (Down syndrome).” He had his head hung low once again like he was reading a death sentence for my child. I wanted to punch him in the face for his approach, but I stayed quiet and allowed him to leave the room in one piece. I then looked down at my perfect daughter and held her so tight and sobbed. Mama bear kicked in, and promised to do anything that this child needed for her to have the best life she possibly could. I also wanted to change the stigma of Down syndrome diagnosis being this awful thing. Once we were discharged from the hospital, we brought her home and I was so protective of her that I didn't want anyone to come visit or know about her diagnosis. I had experienced so much negativity that I could not stand the thought of one more person telling me they were sorry for me giving birth to my daughter. I found myself only posting pictures on Facebook where you couldn't tell that she was different, and eventually even disabling my Facebook all together. I found myself worrying about her future and asking myself if she make friends or be happy.



The public announcement

I had to finally slap myself into shape and remind myself that all these worries were making me miss out on bonding with my baby, who was growing by the day. And that what truly mattered now is that she is healthy and loved. I told myself to worry about the other things when and if they appear down the road. Once she was about 2 months old, I decided to publicly announce her diagnosis to everyone on Facebook. Yes, she does look a little different, and i'd rather people know than speculate. And most importantly, to hear it from me in a positive post sharing how we couldn't be happier about Scarlett joining our family. I have continued to share her because she is so smart, fun and our life would have been miserable without her. She has made me into a better person and taught me to look at things in a different perspective. She has given my family, friends and others so much love and happiness just by being her. I sometimes think back to when they were trying to get me to abort her, and the way they made my life seem like it was going to be. Honestly, all the negative information they gave made me hate myself, I am not going to lie, it did enter my mind a couple times to abort. And I think now of what a loss that would have been for me and my family. The doctors and genetic counselors ruined my experience of my first pregnancy by giving me such negative information. I feel so sorry for the families who get pressured into abortion due to Down syndrome, because they are missing out on such an amazing gift. My opinion on disabilities has changed tremendously since having Scarlett. Every child deserves to be loved and live life, and I hope that doctors and genetic counselors can see that as well. I want people to stop apologizing to mothers when they share a diagnosis and just simply congratulate them. A baby is a miracle and no child deserves an apology for entering this world. We need to stop saying sorry for Down syndrome and start celebrating life.






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