Mexico City, Mexico
(Speaks Spanish)

Jorge, my perfect, beautiful, angel…

To say goodbye
To losing you
Will never seem
Quite right.
We’ll always miss
And cherish you
And love you with all our might.

Well, this is our story…
My name is Tanya Sak and I’m from Mexico City. Up until exactly a month ago I was having a perfect pregnancy, with its normal ups and downs, but I was doing great and had the most important illusion in my life, having my beautiful baby boy named Jorge (George in Spanish) being born aprox. By April 25, 2006.

Until one Wednesday morning, February 22, 2006, I went to have a 4D echo just to get to know my baby’s face and had the shocking news that my baby had a heart defect. They couldn’t exactly know which cardiopathy he had, but in addition to that, he presented a lot of liquid around his heart and thorax and that is very serious. So I started going crazy and started looking for explanations and second opinions with different doctors here in Mexico, until a friend of the family, that is a cardiologist for children, suggested we went to the Children’s Hospital in Boston, MA, which was the best decision and the best suggestion, anyone had ever given to me.

So off we went, by we, I’m referring to my mom and my brother which are my right and left hands, and I don’t know what I would do without them, so after 3 days of making all of the arrangements, we got there on March 3, 2006. Everyone I talked to since the beginning over the phone was so nice and helpful that I was very comforted with the idea that I was going to be very well taken care of over there and exactly, that was what happened.

Since the first day I arrived to the hospital I was surprised by how nice everyone was and even the hospital, itself, was very nice too, because it is really designed for children not to feel like they are really in a hospital, so that makes it a little bit easier also.

And the hospital journey began…. During that first week I felt like a lab rat because I had everything you can mention done, about different diagnostic tests you can imagine like, ultrasounds, echocardiograms, MRI, lab tests, amnio… and this was the defining test that gave us the final diagnosis of what my baby had. This test takes between 10 days to 2 weeks for the results to come in, but after 48 hrs they can give you a preliminary result from a test called FISH, but even though in our case, this results came out normal, you can’t trust this and rest about it, because this are not that accurate, so don’t get excited just yet. After the 10 days had passed, the results were in and the nightmare, really began…Because before this results, the journey of the diagnosis was an absolute rollercoaster of emotions and conditions, because after the first echo and ultrasound I had done, they found that my baby not only had a heart condition, but also had underdeveloped lungs, problems in his kidneys and the most rare condition of all, that was, that he didn’t have a portal vein in his liver, which for what I could understand after consulting another doctor named Dr. Fishman at the Children’s, is the rarest condition to have, although it is not life threatening, like the heart condition my baby had that was called Tetrology of Fallot and was diagnosed by Dr. Tworetzky and Dr. del Nido, who are 2 of the best doctors in the cardiology department at the Children’s Hospital, not only for their knowledge, but also for their care and sensibility.

So after all this info beforehand on March 15, 2006, Dr. Louise Wilkins, who was the OB/GYN that I consulted at the Brigham and Women’s Hospital, next to the Children’s Hospital, also in Boston, MA, told me about the amnio results and they were devastating.

My baby had a condition called TRISOMY 13 with 47, XY, +13 karyotype. Well, I won’t tell you what this means because unfortunately, if you are entering this web page is because you have been diagnosed or somebody in your family just found out this news, that is probably the hardest news any mother could ever get about her baby.

So finally, Dr. Wilkins explained to me that the prognosis for these babies is absolutely devastating and nothing can be done for them. Theory that was absolutely certified by a neonatologist, Dr. Alberto Orozco, that I consulted when I, after 3 days of the results, came back home to Mexico, because the only reason I was going to stay in Boston was if anything could have been done for my baby over there was different from what they could do back home, but since that wasn’t going to happen, I came back home to start making plans of what was going to happen to us.

I also certified this prognosis with a certified genetic counselor, also at the Children’s, named Jill Krejdovsky, who was kind enough to explain everything about my baby’s condition in the most sensitive and caring way and she told me the only good news I could here at the time, and that was that I had just 1% more possibilities than the normal population to have another baby with this condition.
So the second part of this being the hardest journey of my life began…

My OB/GYN, Dr. Manuel Dosal, here in Mexico and I talked when I arrived back here about what the plan about delivering the baby was going to be and he told me that since there wasn’t any reason to scar me and making a caesarean section because that finally leaves a scar on the wombs tissue and there was no reason for it, that we were going to try to go for a natural child birth, but the risk of that at is that you can be in labour from 12 hrs to 3 days and nothing really happen, but anyway, I couldn’t bare the thought of going through another 5 weeks of knowing there was no hope for my baby and meanwhile I still felt him kicking all the time and having hiccups, so that only made matters worst, because the feelings are to opposite in directions, because you know your baby is going to die, but he’s still alive, so really this was one of the hardest parts of all this journey.

So finally the day came and obviously another time of ambivalence with it came too, because one part of you needs this suffering to end, but another part of you doesn’t, because you know that once your baby comes out, he doesn’t have a chance, so it’s another of the hardest days because you realize that this finally is the beginning of the end.

So last Friday, March 24, 2006 I came in the hospital and a very, very long journey began. The procedure started and it took more than 17 hrs from beginning to end to deliver my baby in a natural child birth. The last 4 hrs were the worst, I couldn’t bear the pain and I almost didn’t make it and started asking for the c section but thanks to my doctors, I hung on and at exactly 9:10 am of March 25, 2006 my beautiful, perfect, “little” baby boy was born, I put quotes on little, because my baby was anything but that, he weighed more than 4 kg and was 50 cm long. And exactly as I had planned with the neonatologist (pediatrician), he just received him, cleaned him up and passed him to me. And the most magical and fulfilling 19 minutes of my life began. I started to talk to him, to hug him, kiss him and thanking him for hanging on to the last minute and giving me the absolute privilege of getting to see him alive and to get to know each other. That he was very brave and so absolutely perfect in every way, that he was beautiful and that he was my own little angel. I also told him that I didn’t want him to suffer one bit, so that in the moment that he felt he should go, he should. He didn’t cry or opened his eyes, but I kept looking at his face and I remembered that in my plans I wanted to take his picture to have a reminder of him forever, and I didn’t want to risk in the future not being able to remember his face, but with all the pain, I had forgotten the camera in my room, so I asked my mom to please go get it and the doctor told me not to worry that he had a camera on his cell phone and that he would take the pictures, and thank God, he took them, because they are the most precious treasure I could have and I will never stop looking at my perfect baby boy. When I say perfect, it’s not just a figure of speech, actually I was very worried since I read all about the babies with Trisomy 13 about what birth defect he could have, but in the 4D ultrasounds nothing apparent showed, so I really didn’t know what to expect, but in this continued miracle of my baby’s short life, he had absolutely no external defect at all, he just had the internal ones, especially the heart, because all the time I held him the only thing the Dr. did, was monitor his heart and told me that indeed he was very sick, afterwards I found out that he had a #2 apgar.

So finally, I told him to look for his great grandparents up there, my mom’s mom and dad, which actually I named him after, my grandpa George and my baby George, and that they were going to take care of him and that he was going to look out for me until one day we come together again. After that, also like magic, I couldn’t bare the pain of the suturing they were doing to me down there and I passed out and my mom later told me, that in that same moment, the Dr. took my baby and gave her a sign saying that he was gone, after 19 minutes of wonderful, Jorge, my perfect, beautiful, angel was gone…

I want to give special thanks to all the people that went on this journey with me, because without them, I don’t know if I would have survived it and today still be standing on my feet as I am now, trying to do so.
First of all, I want to thank my mom because she is definitely my inspiration, since I got pregnant I said that if got to be half of the mother she is I could be very grateful, and after all this, I confirmed that she is definitely the wind beneath my wings and I don’t know what I would do without her. I’m absolutely blessed to have the best mother in the world, an example of life, braveness, intelligence, strength, wisdom, all of the adjectives I could say are short for what she is and what she represents to me. Thank you mom and I love you with all my heart.

I also need to thank my family, but especially my brother and my sister that were with me, every step of the way, and a special thanks to my brother who even went with me on the journey to Boston, leaving his family back home to go be with his little sister in this awful journey and coming back home, both of them were with me all the time, worrying, supporting me and especially holding my hand in the worst nightmare of my life and still are. I love you guys with all my heart. Thank you.

Next I want to thank my friends, because as one of them (Pochito) told me yesterday and I think it is a very beautiful thought, all of them have been and still are my crutches in this long path of grief that I have to go through on my own, but whenever I need to gasp for air or take a break on this long way, they are behind me 100%. Thanks to all of them and I love you all very much. You know who you guys are.
I want to thank all of the people in the medical area that also helped me with their kindness and sensibility, make this nightmare a little bit easier. I’m going to mention every one of you, so that people that read this looking for information or support can contact you and know with certainty that they are in good hands. I really want you guys to know, that what you do and especially, how you do it, really makes a difference.

Children’s Hospital in Boston, Ma:

1. Linda Zaccagnini (Nurse Practitioner at the Advanced Fetal Care Center)
2. Luanne Nemes (Nurse Practitioner at the Advanced Fetal Care Center)
3. Beth Volk (International Patient Coordinator)
4. Dr. Pedro del Nido (Cardiologist)
5. Gloria Joswicki (Internacional Patient Representative)
6. Dr. Wayne Tworetzky (Assistant in Cardiology)
7. Jill Krejdovsky (Certified Genetic Counsellor)
8. Dr. Fishman

Brigham and Women’s Hospital in Boston, MA:

1. Dr. Louise Wilkins-Haug (Director, Maternal Fetal Medicine)
2. Kathy Bennet (Fetal Medicine Nurse Coordinator)
3. Karen (Nurse)
4. Dr. Frates (Professor of Radiology Division of Ultrasound)
5. Simona Shuster

Mexico:

1. Dra. Arcelia Diaz
2. Dr. Manuel Dosal Rivero
3. Dr. Alberto Orozco
4. Dr. Hector Alfaro
5. Dr. Daniel Zuñiga
6. Dr. Ramirez
7. Dra. Sol
8. Dr. Kuri

And finally, I want to thank the web page www.livingwithtrisomy13.org for whom I’ve written my story, because in my worse hour of desperation, you guys helped me with all of your stories and pictures, to understand and plan for the best outcome I could for when my baby was finally born and thanks to you, that was possible and made the most magical 19 minutes of my life, possible. Thank you. And I want you guys to know that anyone who needs to talk about what you’re going through or have information, anything to relieve some of the pain if you’re going through something like this, please contact me and I’ll definitely try to help in all that I can.

PS: Actually I want to tell Dana, David and Nathan, that I’ve read your story and as you will see when you read mine it is as if they were almost the same, so if I could help you guys in any way, please let me know or contact me by e-mail at:  tanya_sak@hotmail.com