Summer: Living with Trisomy13

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Summer: Living with Trisomy13 This is Summer Schmidt's Page. Summer has Full trisomy 13. she was born on October 21/2011. Summer was born almost 6 weeks premature with an emergency c-section.

We didn't know about Summer's diagnosis before hand, neither that we had ever heard of trisomy 13. During a non-stress test at the doctor’s office, Summer’s heart rate was so low so I was rushed to an ultrasound in the next room where we found that she is under some kind of stress. The doctor told us go straight to the hospital and you will be there faster than an ambulance because the baby have a

n hour at most. Miss Summer was born 20 minutes from us waking into the hospital, and the reason for her stress was that the umbilical cord was wrapped around her neck 3 times very tight, basically the cord was strangling her. When she was born, she had an extra digit on each of her extremities and that was the first surprise for us. She was rushed to the NICU at the children’s hospital. When she was 5 days old we had a phone call in the evening from her doctor telling us that the genetic testing came back positive for trisomy 13, this was my first time hearing the word trisomy. All night my husband and I were on the internet trying to understand what trisomy is and how it affects her. I think this was the saddest day in my life! I was learning that my new baby may just not survive, but then I found this site Living with trisomy 13 and had a little hope. The next morning the doctor meets us in the hallway of the NICU and asks what we know about trisomy, and then briefly explains that Summer’s chance of life is very slim and tell us that we have to make some decisions. I ask what/ he says that best for Summer is to pull her breathing tube out and let her go in peace. I couldn’t believe my ears, and I asked why? He said that she will not live so why to torture her. I said, she is a preemie baby and almost all preemies here are on ventilators so why you don’t want help Summer. I asked does she have any other problems with any of her organs that are life threatening? And his answer was no. Her dad then said she deserves a chance for life like all these other babies and we will help her to get it. This when we knew how hard the road ahead of us will be, not just because of our little sweet heart’s health but we realized how the doctors feel about this kind of diagnosis and what it will take to convince them at every step along the way to help and treat Summer and not her trisomy! When, Summer was 6 months and 3 weeks old, she was eating on her own, breathing on her own, giving us the biggest smiles, recognizing us and our love to her. Is she behind on her developments? Yes. Does she has some health issues that keep rising along the way? Yes, and we are getting the doctors to work on them one at the time. Was it hard to convince the doctors at CHKD to operate on Summer? Yes, it was, but we talked them into it, it took time but she was doing fine and there were no other reasons the doctors can give us for not operating on Summer than that she is trisomy 13 baby. As of date, and we were told over and over she will not survive anesthesia or any surgeries. She had an incarnated umbilical hernia repaired. And extra digits removed. She has multiple surgeries for her eyes because of glaucoma in her both eyes that was neglected by the NICU doctors as Summer eyes were never checked after birth even if that is a standard procedure of this hospital’s NICU, as a result, we are not sure how much vision does Summer has left but will know by time. She also had problems with her urinary system, she had over 10 surgeries for her kidney, and she is doing fine now. Summer obviously has her own plan and schedule of doing things, but she want to live and we will help her with the grace of God to have a good quality of life for as long as she need to. It has been very hard on our family, all the sleeplessness nights, doctor visits, hospital stays, but the love we have for her and the lessons we have learned from this little soul are invaluable. As of now 2015, Summer is over 3 years old and have great health.

Saying hi to our friends. We are all doing well, staying in and getting good use out of our time at home. @ Manh...
28/03/2020

Saying hi to our friends. We are all doing well, staying in and getting good use out of our time at home.
@ Manhattan, New York

Somehow she managed to take off her pants and started to play with. Sometimes I wonder if she gets up and run around the...
07/09/2019

Somehow she managed to take off her pants and started to play with. Sometimes I wonder if she gets up and run around the moment I turn my face. She is such stinker face❤️❤️😂

26/08/2019

Disabled or not, she still figures a way to get herself in trouble 😂😂😂

Someone is feeling much better today. She started to improve yesterday day during the day, but was miserable in the even...
22/08/2019

Someone is feeling much better today. She started to improve yesterday day during the day, but was miserable in the evening. This morning she was happy again, vocal, and energetic as you see. I hope this continues.

I love this picture because it is full of emotions and is more like the Summer we know at home that not too many people get to know ❤️❤️❤️

Those Pjs are so cute and they match her favorite and most noisy toy😂😂😂
20/08/2019

Those Pjs are so cute and they match her favorite and most noisy toy😂😂😂

This little one can’t give mamma a break. Around her Gtube is infected, her doctor said it’s normal with85% of patients ...
19/08/2019

This little one can’t give mamma a break. Around her Gtube is infected, her doctor said it’s normal with85% of patients during the healing period. He put some chemical on the infected area to “burn” the infection down, he said in about 5days it should be gone and if not we go back in. Now on top of this, she is acting sick and vomiting, I would worry it’s caused by the Gtube infection but her dad is sick the same way too. She has no fever or any other symptoms, so we will see. And still waiting for this nice and relaxing break for the mamma 😁😁

How did she manage this?! 😊😊😊
10/08/2019

How did she manage this?! 😊😊😊

We had tough couple of weeks after the Gtube surgery, but I’m happy to say that things are much better. We have a post-o...
10/08/2019

We had tough couple of weeks after the Gtube surgery, but I’m happy to say that things are much better. We have a post-op next week, I hope this goes well ❤️❤️❤️

Our new daily routine. It has been rough since Summer left the hospital on Friday, but it is also a huge learning curve ...
29/07/2019

Our new daily routine. It has been rough since Summer left the hospital on Friday, but it is also a huge learning curve for us and things to get used to. Overall, she is doing oaky, just a lot of gas and bloating problems, the stoma site is a bit tender, and so much crying and discomfort. Hoping things will get easier in the next few days.

After multiple episodes of vomiting, chocking, and gaging, setting up had helped a lot. Now waiting for the gaging to re...
24/07/2019

After multiple episodes of vomiting, chocking, and gaging, setting up had helped a lot. Now waiting for the gaging to recede too. She is still not eating yet, completely NPO, but hoping to start later today. Otherwise everything seems to go good for now. Please keep all the good vibes and prayers coming.

Surgery day for Gtube!! Send good vibes!!!!
23/07/2019

Surgery day for Gtube!! Send good vibes!!!!

Finally there was a study done with the Children's Hospital of Eastern Ontario proofing exactly what I have done for Sum...
09/09/2018

Finally there was a study done with the Children's Hospital of Eastern Ontario proofing exactly what I have done for Summer all these years. I'm so glad there are studies out there for the skeptical parents to give them some peace of mind

When Summer was in the NICU after birth we were told that she can’t go home before she feed or get a G-tube. One thing we knew then that we didn’t want invasive medical intervention for her, so we declined the surgery. Instead, we knew she has her sucking reflex intake despite her doctor insisting she doesn’t, so we wanted to try breastfeeding. I was”allowed” to breastfeed her under the monitoring of a nurse. Every-time Summer de-sated just few numbers due to her latching, the nurse stoped us from continuing the feed. After numerous tries and due to the very uncomfortable situation, I finally got frustrated with the whole thing and gave up (shame on me). The alternative was bottle feeding, but we needed some guidance from a feeding therapist. When the therapist came, she spent total of 5 minutes with Summer before announcing that Summer can’t suck through a bottle and recommended G-tube. Again, we declined. Her dad and I took the task on us to get Summer to feed through a baby-bottle, we convinced her doctor to let us try with no monitoring this time. Guess what, after 1 week of hard work, Summer did it!!! We were finally home!

For the first 2 weeks at home, it took Summer 20 minuses to eat 5 ml, this is 5 teaspoons in 20 minuses, this meant she was eating all day-long with only few breaks in between. It was hard, frustrating, and very daunting task, but by the time Summer was home for 4 weeks, somehow she got to the point of finishing 4 oz breastmilk bottle in 45 minuses!!

Now, Summer completes 16 -20 oz of her homemade, pureed vegetables with all the goodness in it in about 10 minutes or sometimes less, through STRAW CUP.

The goal now is to get Summer to feed by spoon!!!

The point here is, don’t give up, and follow your instinct, follow this gut-feeling. As a new parent of a trisomy child, we are lost, confused, afraid and angry. But when this wave of mixed emotions passes, and it will, we are the best expert to our children's’ needs.

Not every child is the same, and every journey is different, but in the end we all arrive to the same conclusion, WE ARE DOING THE BEST WE CAN FOR OUR CHILDREN!!!!!

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