A Post Natal Diagnosis of Down Syndrome for Just One Twin

We knew we were having twins from the first 8-week scan. It was a surprise pregnancy so you can imagine the added element of excitement finding out there were 2.

 

My pregnancy was fairly smooth. We did every test; each came back negative for all genetic defects. Thinking back now, I remember when we had gotten the DS specific test back negative and told our families, it was a unison, “thank God” from all of us.

 

I really hate that memory.

Every month then turned bi-weekly ultrasound was in and out. Baby A (Jaime, DS) was always slightly smaller than Baby B (Jacob, typical). I did go into preterm labor at 32 weeks. I was in the hospital for 3 days and they gave me magnesium to stop contractions and 2 doses of steroids to rapidly develop the boy’s lungs in case they were coming. I went home. Exactly one week later on June 10th 2015 after some lazy lounging in the pool, my water broke and it was go time.

 

I delivered C-section 1 minute apart each 9:28pm & 9:29pm. We had the whole OR singing “do you love me” when I get nervous or scared I sing, apparently it was contagious. Jaime came out crying, and it was music to my ears, 60 seconds later Jacob was born with a louder roar.

 

They brought Jacob over for dad and I to see, kiss and love on…but not Jaime. I knew something was wrong.

 

I looked out of the corner of my eye and they were wheeling him out I yelled to my husband “FOLLOW OUR BABY!” and he did. I was all alone with no husband and no babies finishing up in the OR heading to recovery. Before they took me to my room the nurse told me the boys were good and in the NICU since it was almost midnight it would be quiet and she would wheel my stretcher in so I could see them.

 

For 33 weeks we were expecting our babies to be 3-4 pounds each, not my boys, Jacob was a whopping 6 pounds, and Jaime 5 1/2 pounds.

 

John spent the night into the morning leaving the room to go see them. I was exhausted. When he showed me pics of them I said to him “Jaime looks different, something about him, no?” John was like “no way, he’s perfect.”

 

It was now late morning the next day. A doctor I was unfamiliar with (I think she was part of the NICU team) came in. She wasn’t smiling and looked like she was about to give us bad news. She told my husband to sit next to me. To be honest, I thought she was going to say we lost one of the boys. She said I’m sorry to tell you this, but we have strong reason to believe Baby A has Down syndrome also known as Trisomy 21. She went on to say a bunch of other stuff; I nodded along and just said: ok, I understand.”

 

She said they would do blood work to confirm.

 

Meanwhile John broke down in tears melting into the bed. She left, and as soon as the door shut, I broke into tiny pieces. We called my mother in law, who was on her way, and my husband couldn’t speak and she just kept yelling “omg, what happened to the babies, John talk!!” I grabbed the phone and told her. She immediately started crying saying, “No, this can’t be, no.”

 

I wanted nothing more than to see them right away. I got in my wheel chair and down to the NICU we went. I stared at Jaime. With all his tubes and wires (Cpap for oxygen, NG tube feeding, IV for Fluids) I just couldn’t see it.

 

John held him and cried, but told him how much he loved him and will always protect him. Jacob was on the other side of the NICU in the same boat. I didn’t post any pictures of them for 4 days. I was scared people would notice.

 

I sent a group text to my close friends and family letting them know. Some said sorry you’re going through this, most said congrats on the boys we can’t wait to meet them. I didn’t allow any of my family to come see them, and to be honest, none offered. Only my aunt Patty who just showed up, uninvited and unexpected. Looking back, I’m glad she did come.

 

My husband is very close with his family so they were always in and out. It didn’t feel like I just had babies, because my room wasn’t filled with people and laughter. It was me, curled on the bed crying most of the time, not wanting to talk to anyone and more often than not alone. John was broken and needed his family; he spent most of the time with them, in the NICU, out eating or just out of the room in general.

 

I was broken as well and had no one.

 

This issue bubbled over in a marital fight a year later and he was very sorry. He didn’t realize he did it; he was in a fog and said that room, the room where we heard those words, felt like it had no oxygen, he couldn’t stand to be in there.

 

I remember being fine for a few moments and then I would think of how they would be the “twins” I imagined in similar outfits on the same sports teams, people saying look at those boys go. Then I would cry, the kind of crying you do with your entire body. I would cry until I feel asleep then wake up and have another thought of how different my boys were going to be and it would start the cycle all over again.

 

I also tried to think of anything I could have done wrong. I did forget to take my prenatals a few times and I did eat some cold cuts and hotdogs. Did I cause this? When it was time for discharge without my boys I now was carrying more than I could bare. There was no exact answer when they would come home. They both weren’t eating from a bottle, oxygen was low, aspirating, jaundice and then Jacob had blood in his stool.

 

I came home empty handed and a painful C-section reminder of that.

 

I would try to read this book called The Truth about Down Syndrome and each page made me cry.

 

To me DS was only an intellectual disability. It was what I saw in public or on TV. I also worked with a woman whose teenage daughter had DS, I met her a few times but it didn’t have much impact on me at the time. As I read each page, physical delays, health concerns, therapies, speech delays or lack thereof. My world got darker.

 

I didn’t want this for my son or my family.

 

It wasn’t fair! I still had hope that his blood work would come back normal and this was all a dream.  Every day I would go see the boys who were now side by side, I would hold them, read to them, and study their every feature. I was so in love it would move me to tears.

 

Every second I spent with them made me realize how perfect they both were.

 

I started to accept this was our new life and DS was just part of it, it wasn’t the whole damn tapestry. On day 10 we were given the official diagnosis and we already knew. We didn’t cry we didn’t get angry we took a deep breath and said what’s next. The hospital connected us with Early intervention, a feeding specialist, and we started in with Physical therapy right in the NICU and plenty of literature.

 

Both twins were so strong, coming off Cpap, IV’s, no more jaundice, but feeding remained an issue. Finally, Jacob got it and it was a bitter sweet 4th of July when he came home. Not Jaime, he would suck and become so tired. The nurses said he was a lazy eater or chalked it up to his DS. They would let him try a few minutes of bottle and quickly give up putting the rest in his NG Tube.

 

To be honest it was harder having one home and one not.

 

I was so torn emotionally and physically. I did not get to enjoy my time at home with Jacob because every morning I would drop him off with my mother in law and I was fully committed to getting Jaime to drink. I did not want to miss a single feeding. I could give Jaime the time he needed that the nurses couldn’t.

 

Jaime tried so hard for me to drink and would do 4 ML which was the most he ever did but then pass out for hours. I was so frustrated. I told the doctor let me take him home ill learn how to do the NG tube, check it, clean it, change it, but I can give him what he needs at home. He needed  few days to consider. In that time we came across Peggy a NICU nurse. She said she had Jaime some days and from her experience in the pediatric cardiac unit he showed signs of cardiac issues.

 

I dismissed her and said he had a heart scan only a tiny tiny hole was found and the doctor said it was of no concern.

 

2 days later the NICU director agreed to let Jaime come home on NG, and I was ecstatic. We ordered supplies, the nurses gave me a crash course and the last step was a discharge ECHO (heart scan) I had the car seat waiting, John was on his way and I watched as they did the scan, 10 mins, 20 mins, 30 mins then 2 more doctors came down and continued to scan.

 

After an hour, Dr. Kurer introduced herself as the director of pediatric cardiology and was sorry she had to give me the bad news Jaime would not be leaving that day. He had 2 holes, ASD, VSD and a diagonal shunt. In addition, all these issues were causing onset pulmonary hypertension. (heart pressures). He was going to need surgery soon.

 

He was transferred to CHOP Children’s Hospital of Philadelphia where we received great care. We were grateful enough to get a room at the Ronald McDonald house, so we were able to bring Jacob and be close to Jaime. The team of specialists at chop wanted him to get a little bigger before surgery and were confident in the series of medications (2 heart meds, acid reflux and a diuretic)  they had him on plus the NG tube that we could take him home FINALLY!! July 26th (6 weeks after he was born) We were all going home as a family of 4.

 

We lived life for the next 2 months as normal as we could with twins. It was/is exhausting. They both wanted to be held, fed, changed at the same time. The first few times Jaime ripped out his NG tube, I went into panic mode and we both cried as I stuck it back down. His cheeks were raw from the face tape and I had alarm reminders for the meds.

 

We started Early intervention therapy right away. PT, OT and Speech. Looking back, it’s funny to think of him doing therapy at 2 months old, he didn’t do much or at least it seemed that way. But they always said how well he did tracking, following & showing interest.

 

He had surgery Sept 15th, and it was the scariest day of my life.

 

We all waited in the waiting area to be called back. It ended an hour earlier and with no issues. All of his holes were closed and we avoided life long pulmonary hypertension. To my surprise, Jaime recovered in 4 days and we were home!

 

For the first 16 months of their lives, time was filled with doctors appointments. In that time Jaime was prescribed glasses for left strabismus (cross eye/ wall eye), tear duct surgery, orchiopexy surgery (right testicle would not descend) & regular visits to ENT, his ears nose and throat channels are very narrow. All the while, Jacob happily goes along and has become all to familiar with waiting rooms.

 

I often feel guilty that Jaime’s appointments take priority and Jacob does get jealous of the “attention” his brother gets. I still haven’t found a way to overcome that.

 

Jacob doesn’t realize it yet how important he is to his brother. Jaime is always copying what his brother does, good or bad. When Jaime gets a new therapist he is hesitant until he sees his brother engage with them giving him a feeling of “its ok.”

 

The boys are now 21 months old, and full of life. Some days are harder than others. As they get older Jacob’s vocabulary grows by the day and he is running jumping climbing keeping up with the other tots on the playground.

 

Most days Jaime is very vocal in a different way, he knows some basic words and sounds and can let us know what he wants through signing (he knows about 20 signs) he’s not walking yet but has an incredibly fast army crawl ( he won’t get on hands and knees) but when he’s in his posterior walker he flies. He pulls himself up, grabs the side handles and takes off, RUNNING!

Something we’ve come to enjoy about our twins is we get to celebrate their milestones at different times and each get the attention for themselves. Our whole family revolves around the boys now. Everyone fights over who can babysit or take Jaime to therapy or can grandma please take them to swim class this week.

 

They’ve been ring bearers pulled in a wagon 3 times already.

 

They are very much their own personalities. Jacob is very needy, the center of attention, and always hamming it up while getting into everything. He’s most happy when outside in rain snow or shine. Meanwhilem Jaime is very independent, doesn’t take much to fall asleep, is content figuring thing on his own, loves to eat EVERYTHING and is head over heels over our dogs.

 

I think the hardest part, at this stage in the boys lives, is when we go out.

 

When they were small, people didn’t ask a lot of questions they just saw 2 small babies smiled, made small talk and carried on. Now that they are olderm and especially since Jacob is significantly bigger than Jaime, people come up and go, twins? How is it that he’s smaller? They look so different. How come he walks and he doesn’t?  Depending on how genuine the person is I normally just say “Yes twins, fraternal, which means they’re not identical.” You can just tell when people are being nosey and the ones who genuinely want to know them.

 

As cliché as it sounds The boys really have changed my life for the better. I’m more patient, less judgmental, and more accepting. I don’t shy away from the differently able when I’m out like I shamefully did before.

 

When we see another family or person out with Down Syndrome my husband and I race over to start up a conversation. I hope people do the same to Jaime. I’m excited and nervous of Jacob’s future. Will he feel held back, will he feel he needs to “take care and defend Jaime?”

We will always encourage our boys individuality and push them to their full potential, but there’s something about that twin bond that we’ll never understand, and I’m sure they’ll remind us of that their whole lives. My husband and I always wanted 3 kidsm but after the boys were born, we weren’t sure if it was the best idea.

 

My husband was also on the fence about what if we have another child with DS. It’s not the diagnosis, it’s everything that followed. He wasn’t sure if he could relive it all. Also, we selfishly thought Jaime would take up a lot of our attention and would struggle to keep Jacob feeling equally loved. That was quickly disproved after realizing how much richer our lives became with the boys. Jaime didn’t take anything away from his brother or our family he added this feeling pure joy that is almost impossible to describe.

 

This is why we knew a 3rd was going to bring us full circle. We can only hope baby sister coming in less than 4 months can keep up with this duo. The best advice I could give parents in our similar situation is don’t feel guilty for your feelings. You’re allowed to feel angry, hurt, betrayed, failure.

 

You’re allowed to grieve the loss of the child and life you imaged having. Just try not to stay in that place for too long because you really will miss out on your little slices of perfection you created. Get connected with support groups in your area and you will meet some really great families.

Crystal is a 29-year-old mom who lives in central New Jersey. She is the oldest of 3 much younger brothers; so she’s been wearing the maternal hat for quite some time now. Crystal met her husband at their Spanish social club and they instantly clicked (so much so that they  were engaged and expecting their twin boys just 6 months later) Crystal and her husband moved to the suburbs to be close to family, and she switched careers to allow more time with her newly growing family.  Crystal hasn’t looked back since. You can follow crystal on Instagram @cryscrossapplesauce

 

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