I wanted to start our story by telling you a little about us first. My parents are from Ecuador and I’m 39 years old. I’ve worked full-time in a few offices and for the past 15+ years I’ve also been a part-time Group Fitness Instructor. My main focus has now been Zumba because I love fitness and fun music! I even taught Zumba till almost nine months during my first pregnancy and have a healthy boy, Jordan. My husband is Chinese (parents originally from Taiwan) and also 39 years old. He is an amazing high school guidance counselor at Francis Lewis High School and also the Girls Varsity Basketball Coach there.

Jordan is three years old. He is our world and we were trying to make a sibling for him. I secretly wanted another boy. I found out I was pregnant by taking an over-the-counter pregnancy test. My regular OB-GYN confirmed the pregnancy but sent me to Lenox Hill Hospital the week after, to confirm my due date. That’s when the craziness started – just in time for Halloween last year 2013. So at my 2nd sonogram, this time at Lenox Hill, the technician tells me “You know you’re having TWINS right?”. My heart stopped and I started crying hysterically- in a bad way. I was overwhelmed, in shock, and horrified. The week before, I was told I was pregnant with only one baby, now I was getting hit with news that it’s a TWIN pregnancy instead! Our whole family was in shock. We don’t have twins on either side of our family, except for my husband’s sister. She’s the first and only one with twins and it’s funny because they only live one block away from us! They were born about nine months right after my son. Twins run on her husband’s side of the family, which technically has nothing to do with us! It’s a big mystery for us how it happened all of a sudden to both my sister-in-law and then to me- which again, adds to the shock!! But by the time it got to Thanksgiving and Christmas, I started accepting and even embracing the fact that it was a twin pregnancy. I figured that maybe it’ll be at least one more boy since my sister-in-law had boy/girl twin babies already. My husband, family, and I were all so excited about the January 7th, 20-week anatomy scan to find out the sex of the babies! The whole time I continued teaching Zumba Fitness classes.

Now the hugely-anticipated date of January 7th came! I was so thrilled to find out what we’re having! 2 BOYS or 1 BOY & 1 GIRL. These were the only two scenarios I was envisioning! We even had names picked out if it were to be two boys! During the anatomy scan at Lenox Hill Hospital, the sonogram technician starts spending a lot of time inspecting something in the first baby (we didn’t know she was looking at the heart). She was taking a really long time there. Then she continues scanning and says that the first baby is a girl. I was a little disappointed but then thought maybe the next one will be a boy! She took a long break before scanning the 2nd baby (probably to notify a doctor of what she found with the first baby) and then came back to continue. She spends a long time again in an area of the second baby (we didn’t know she was looking at the heart) and then continues scanning and tells us that the 2nd baby is also a girl. I was upset for a brief moment until my husband said “Don’t be upset! We are blessed to have 2 beautiful HEALTHY girls on the way” and then I knew that he was right, and I even got excited at the thought of two girls at that moment! I was starting to envision how beautiful they would be!

THEN THE TECHNICIAN WALKS OUT & A DOCTOR COMES INTO OUR ROOM AND DROPS THE BOMB ON US. He said our girls will BOTH require open heart surgery because they BOTH have Tetralogy of Fallot. I was like WHAT? WHAT IS THAT? OMG! I started crying hysterically feeling so helpless about my poor baby girls. I was only able to celebrate for a few seconds at the thought of having two healthy girls, before hearing the terrible news. Then the doctor said that I need to have an emergency amniocentesis procedure the next day to find out if our babies also have Down Syndrome or DeGeorge, because it’s PROBABLE that they have SOMETHING ELSE, since it’s RARE and even UNHEARD OF that twins (especially fraternal twins) BOTH have heart defects and that we might want to consider OTHER OPTIONS (as in ABORTION). He brought up the fact that I only had a few more weeks to make a decision because the cutoff for abortion in NY State is 24 weeks. We were then rushed over to a cardiologist specialist from NYU, Dr. Presti, and he confirmed the heart defects on both girls.

That day, January 7th, was the worst day of my life. I couldn’t believe that instead of celebrating my pregnancy, I had to face a decision about abortion. How could I even think of making this decision when I could ALREADY FEEL MY GIRLS KICKING AND MOVING IN MY BELLY! When we got home, we started scrambling looking for answers on the internet. We were both terrified and started thinking the worst. I started to make up my mind that if they find that the babies have Down Syndrome or DeGeorge that we would most probably terminate the pregnancy. We decided it would be best because of our son. We didn’t think it would be fair to him to have two sick sisters with special needs. We were cursing at the fact that this particular heart defect (TOF) happens to only one in 2500 pregnancies, and it happened to BOTH of our twin babies. The statistics are crazy because since it’s fraternal twins, it’s technically two different pregnancies! How is it possible that we got two in 2500?!! WHY COULDN’T WE HIT THE LOTTO INSTEAD!!! That night, I was scheduled to teach my regular Tuesday Zumba class and I immediately called my friend to sub the class. No more Zumba. I couldn’t teach in this state of mind, let alone listen to fun music.

Then the next day I had the dreaded amniocentesis procedure. I had already read about how scary it is with twins so I was a terrified nervous wreck during the procedure. The babies must have been so scared because I was so stressed!!! Also that day happened to be one of the coldest days of the year so the high risk doctors weren’t all there and they were running very late with their appointments which added to the stress. Then the doctor that did the procedure wasn’t very experienced with twin amniocentesis and she messed up! First she wasn’t able to pull enough fluid to get all the proper testing required (we had to wait an extra excruciating week to get results because of that!) and then another terrible thing happened … The DNA came back IDENTICAL for both samples even though I have a FRATERNAL pregnancy! The good news was that the samples were negative for Down Syndrome or DeGeorge but bad news was that they don’t know for sure if they tested both babies or the SAME BABY TWICE! We were so upset and terrified about the results because what if one baby still had Down Syndrome on top of the heart defect?! We couldn’t believe the doctor messed up the amnio procedure. We wouldn’t be able to make an educated decision because of the inaccurate results! Also, we were told that we wouldn’t know for sure if “something else” went undetected in the results. So we were still so scared about the babies possibly having another type of bad syndrome, or delays in the future. We were very concerned for our son and his quality of life if we were to continue with the pregnancy because two sick babies would be a lot to handle along with a toddler.

I started researching online about twin abortion procedures at 20+ weeks and it seemed like it would be a horrifying two – three day procedure. I was crying so much thinking that I might need to do it because we didn’t know what was going on (after getting those terrible amio results – not knowing if the second baby was even more sick, and wondering about the unknown) we were scared thinking about my son’s quality of life. I cried even more when I felt the girls moving and kicking inside me. I felt that they were trying to tell me NO MOMMY DON’T DO IT! WE ARE GOING TO BE OK!

But while I was researching online, we looked up a great hospital, Columbia/NY Presbyterian, that our family had recommended. This hospital dealt with heart babies all the time and there was a great pediatric heart surgeon, Dr. Bacha, that specialized in treating this particular heart defect also. However, we were still considering termination because we didn’t know what was going on because of Lenox Hill and the bad luck we had there.

Now it was Martin Luther King Day, and I wasn’t able to reach the OB-GYN clinic of Columbia/NY Presbyterian because it was a holiday. I wanted to inquire (just inquire!) about twin abortion procedure (even though I still couldn’t possibly imagine going thru this dreaded procedure!) During that time, I had also been reaching out to another Manhattan TOF Heart mom, and was frantically asking her questions. Also I had a good doctor friend in Holland, Rebekka that was advising us via email, and we were getting opinions from close family and friends. But that day, on Martin Luther King Day, a coworker told me something I’ll never forget. She said something like “Don’t give up on your girls. They will be feisty little fighters!”

Once I heard that, I started thinking positive and instead of trying to reach the new OB-GYN for information about abortion, I looked for their Children’s Hospital- Morgan Stanley Children’s Hospital of NY Presbyterian. I didn’t think I’d be able to reach anyone because it was still Martin Luther King Day but by some miracle, after telling a hospital receptionist our story over the phone, she gave me the actual cell phone number of the pediatric heart surgeon Dr. Bacha! I called the number, thinking I’d just get his voicemail, but instead, he picked up his phone!! I was in shock to hear his voice!  I frantically told him about our situation and the horrible decision we were facing. He then said this heart defect is NOT a reason for termination. That calmed me down a bit and that’s when we started to make the switch to Columbia/NY Presbyterian (which by the way, is in the totally opposite side of the city for us so it wasn’t very convenient). After a few days, my new OB-GYN from Columbia/NY Presbyterian said that everything else looked normal in the girls’ new anatomy scan and that they can fix the heart problem. They said that Lenox Hill Hospital should have mentioned to us that everything else looked normal with the girls. They said we should MOVE FORWARD with the pregnancy, but they would understand if we still decided to terminate- because technically, we didn’t know for sure, since we didn’t have a second amniocentesis procedure done-to find out if truly both babies didn’t have Down Syndrome or DeGeorge. SO WE TOOK A LEAP OF FAITH AND DECIDED TO MOVE FORWARD! That’s when we started preparing ourselves for the rough road ahead by touring the NICU and meeting the surgeon, Dr. Bacha.

I will never forget that month of January 2014. It was the darkest month of my life because of that decision we had to make, but I was SO RELIEVED in the end and I thank everyone that helped us in making the decision to move forward with the pregnancy. I was starting to get back to my normal self again and even started listening to happy music again!

And throughout all this craziness of dealing with that decision, my husband was able to coach & mentor his Girls Varsity Basketball team to a PSAL City Championship at the Barclay’s Center in Brooklyn! I went with my son and sat right behind the bench to cheer them on to victory! Talk about UPS & DOWNS!!!

A good photographer friend, Dan Niver of Dan Niver Photography, offered a Maternity Photoshoot as a gift to us after hearing our story. That day was so special because I got to feel pretty for a day after all the stress and agony we had endured in the previous month. We celebrated the pregnancy that day during the photoshoot and I could feel the girls smiling inside me for the pictures! Then a few months after, a Zumba instructor friend, Edmee Cherdieu D’Alexis of ZClub NY, hosted a Zumbathon in honor of my pregnant belly with the girls! It felt so great to feel like the star of the event amongst amazing Zumba instructor friends and supporters! I was just sitting there the whole time watching everyone dance to amazing music and I couldn’t help but dance while sitting on my chair! I know my girls were dancing in my belly that day & they must have been so happy since I was so happy too!

Then a friend of ours which happens to also be from Ecuador, reached out to us to say that her daughter also has TOF and is a little swimming champion! And countless friends reached out to tell us that Shaun White, a famous snowboarder and skateboarder, also has TOF and is an Olympic champion. This gave us lots of hope for our girls!

So now I was back to focusing on the pregnancy and making many visits to Columbia/NY Presbyterian, even though it was far away from where we lived. I lasted till 36 weeks, 1 day, (5 days earlier than my scheduled c-section) when my water broke on April 30th 11:30pm. I took a cab in the middle of the night and found out from the doctors on staff that night that I had preeclampsia from a previous urine sample I left a week ago. So I had to get an emergency c-section. Right away, they put a catheter inside me WITHOUT ANESTHESIA – PAINFUL! Finally after waiting several hours for an operating room to be ready they started the C-section. I was dreading the procedure because last time with my son, I was wide awake and thought it was traumatizing to get cut open while still awake. I was shaking and extremely nervous this time again, so they drugged me up pretty nicely and I was so much calmer during this C-section than the first time.

Selena and Jasmine were born May 1st 6:05am and 6:06am. Jasmine was quickly put on Prostaglandin and breathing tubes to help her breathe (she was the Blue Tet baby) and Selena was doing ok being the Pink Tet baby. I was still dealing with the preeclampsia, and was on high blood pressure watch. One day my high blood pressure was through the roof and I had to be whisked away to the High Risk Ward and was strapped to a bed and pumped full of magnesium for 24 HOURS. I mark that as the 2nd worst day of my life! Not only was I getting magnesium intravenously into my system (which SUCKED!!!) but I COULDN’T SEE MY BABIES!!! I recovered somehow and was able to see my babies the next day. That next day was very special because I was able to hold both of our baby girls at the same time and it was SO AMAZING TO FINALLY HOLD BOTH THEM TOGETHER!!! AND THAT’S WHEN I FELT SO BLESSED TO HAVE 2 BEAUTIFUL LITTLE GIRLS!!!

I was finally discharged in seven days. Selena came home in nine days (and sent home with a Pulse Oxymeter machine to check her Oxygen levels because they were in the high 70’s, low 80’s) and Jasmine stayed behind. I was DEVASTATED to leave one baby behind at the hospital but tried my best to visit Jasmine every day. Again, the hospital was a far commute! She had her corrective repair heart surgery at 15 days and that was so heartbreaking for me. Jasmine was only five lbs and even though I was prepared, I was terrified for my tiny baby! I cried before her surgery, and afterwards when I saw all those tubes in her, I cried even more. She was recovering quickly but after a few days, she started getting arrythmias (irregular heart rates) at the NICU. Her heart was confused after the surgery and heart rates were jumping from low to high numbers! Very scary and could be deadly! That’s when they had to give her a Cardio-Version procedure to get her heart rate back to normal – yes, like in the movies! I was so upset because I was at home alone with the other baby, and couldn’t be there for her during that scary sounding procedure. They started giving her strong medications at the NICU to regulate her heart rate but it wasn’t working. She ended up getting three cardio-versions on separate days. Finally she started getting back to normal with her heart rates because of the medications, and Jasmine was discharged at 35 days!

It felt so great to finally have both babies together with us at home! But now is when something terrible began. They both started developing this horrible little thing called GAS. BOTH BABIES HAD IT. It could have been colic, who knows, but they BOTH started crying at the same time between 8pm till 2am EVERY NIGHT. Nothing consoled them. It was a nightmare!!! I felt cursed again & am not sure if I started going through post-partum depression at that point because I was thinking some pretty horrible thoughts during those sleepless nights. Somehow, I managed to think of positive thoughts as well. I thought about my son, and my girls and their strength. Those good thoughts got me through those rough days!

So Jasmine was only home with us for 2 weeks when she woke up one morning PALE & LIFELESS. I knew something was wrong so we rushed her to NYU hospital that was closer by (also her cardiologist Dr. Presti is from NYU). She was having arrythmia’s again and was put on a heavier dose of the strong heart rate medications. The rhythm specialist, Dr. Cecchine, said that she could have died that day if we took any longer to get her to the hospital! I started crying again once I heard she had to be admitted at the hospital again. I only had both babies home together for 2 weeks! It was heartbreaking to only have one baby at home again. Finally, Jasmine came home after six days but with heavier dose of the medications. By the way, the medications can cause side effects but supposedly babies are resilient towards that. I hate that she depends on this medicine but Dr. Cecchine is starting to wean her off next month.

As a twin mommy, it’s hard to be separated from one baby and you want both babies with you at all times. Now I had both babies together again but I knew it would only be for a few weeks, because now it was Selena’s turn to get her surgery! She started turning purple when she cried and I was noticing that her feet and hands were blue-ish. So her corrective heart surgery was rescheduled from end of August to July 31st. This time, she was going to stay at a closer hospital- Weill Cornell/NY Presbyterian and with the same great surgeon, Dr. Bacha. That day finally came and I didn’t cry this time when I dropped her off to get surgery. But when I saw her after the surgery, I broke down in tears again. NOTHING can ever prepare you to see your baby all puffy and full of cables after surgery. Well, now it was Jasmine’s turn to stay home alone with me and she started to really open up & show her personality! She’s a GIDDY LITTLE BABY! Even though I was so sad about Selena being away from us, I was starting to give Jasmine all the love & affection she had missed from me when she was at the hospital for 35 days and another six days afterwards. As for Selena, luckily she recovered quickly and came home to us in seven days.

Selena was cranky for about two weeks after her surgery when she came home to us. Any time she’d hiccup or sneeze, she’d cry. She was sent home with some pretty strong narcotics as painkillers and I was trying to only give her Tylenol instead. Slowly she started healing and was back to her normal self again in a couple of weeks.

Right now, the babies are six months old and doing well! No more gas, and are starting to sleep through the night! But I feel like they’re a little delayed with their milestones, so we are trying to get help from Early Intervention Services to help them catch up to “normal” babies. Other than that, our baby girls are looking very healthy and have already started to eat solids! And I’m slowly going to start with Zumba again by teaching it at my son’s pre-school!

Jasmine is due for another procedure when she’s 2-4 years old because she also has Pulmonary Atresia. Both girls are due for another procedure when they’re 15-18 years old. They are being closely monitored by their cardiologist Dr. Presti and Jasmine’s arrythmia is monitored by Dr. Cecchine- both from NYU which is really close to us. As for the future, I can’t even imagine having to send off our baby girls to surgery again, but we will take it one day at a time and try to enjoy them and give them a normal quality of life.

By the way, our son Jordan LOVES his sisters! He is very sweet and caring towards them. We are so happy that things are starting to get back to normal again. However, we feel like they require special attention that only a mother can give, so I quit my full time job and my part time Zumba gig to take care of them. It’s going to be a financial struggle without my income but we’ll make it work somehow. Selena and Jasmine are our miracle babies and have made this crazy and rough journey all worthwhile. They have overcome so much in so little time and I’m so very proud of their beauty, strength and resilience throughout all this.  No matter what the future brings, I know we made the right decision!

And throughout this whole journey, we have had amazing support from our close family and friends on Facebook and Instagram.  We are so thankful to them and we strongly believe that all the positive love & energy we received throughout the pregnancy and during the surgeries helped our baby girls!!  We are also so very thankful to Dr. Bacha for saving our girls’ lives and for picking up his cell phone that day!! We are so thankful for all the nurses and staff at Columbia/NY Presbyterian, Weill-Cornell/NY Presbyterian, and NYU!! Another thing is that it’s also especially gratifying to connect with other heart moms.  We have a special bond- a traumatic pain and suffering that no other mom should have to go through with their baby, which is why we support, love and understand each other.  That is why we walked at the2014 Congenital Heart Walk on October 26th – to spread CHD Awareness!!  I want other expecting moms that find out about their baby’s heart defect that: Yes, it will be a struggle!  So do your research and weigh in the pros and cons.  But with the proper support system from great medical teams, friends, and family, you can also get through CHD.  It will be a lifelong journey but give your babies a fighting chance!! They will become your hero afterwards!!!