Daniel Miguel Gonzalez

July 11, 2008 - November 25, 2008
Four months

Update 1-2-09

You were so beautiful. Before I ever saw you, I felt you and you made me whole. With you growing inside me I was a woman, complete, and fulfilling my natural self. You becoming a person; I becoming a mother. I smelt the change in the bathroom, seems strange but it sent me to the store and pretty soon two pink lines had me screaming. We were so happy. Your daddy and I felt so lucky. Your life was precious even then. Baby. That's what we called you. We had early ultrasounds done at a free women's clinic. You didn’t even have a heartbeat yet. You were so small you looked like a little twig sticking out inside a bubble. We took your first picture and made it into a wallet size and mailed it out to EVERYONE. And everyone was so happy. We started keeping a journal. All sorts of interesting stuff. I started collecting baby things some pink some blue but mostly yellow.

Then at 10 weeks, stuff began getting funny. On Thanksgiving 2007, we had a red scare. And at the emergency room they checked me out and said it was normal. When we went for our first visit with the doctor, my gut had me asking for a test that seemed pretty standard. I had read about it and I was curious. I just knew I really wanted to have it. C. V. S. to make sure you were ok. The doctor laughed at me. She didn’t take me seriously. After all I am young. Totally not in the high risk category. Since this was my first pregnancy, I must just be over reacting. I started feeling very crampy, but again the doctor said it was all normal. But it really hurt and my mom said it didn’t sound normal. It was ok though, I dealt with it. We just tried to be careful. I got a new
doctor.

On our fifth visit to Labor and delivery. I knew that there was no way this could possibly all be normal. They did the 20 week screening ultrasound a few days early, and that night just haunts me to this day. Son, I don't mean this in any negative way, but that night was when our happiness began to be tinged with grief. They said you had some anomalies. Heart problems, kidney problems, facial deformities. They said you probably had a gene disorder. Something serious. We had to drive two hours for a more detailed ultrasound. Then a needle in my belly to confirm what the doctors suspected. They said there were two likely possibilities T18 and T13. We crossed our fingers for T21 because we didn’t understand and they had told us that T13 and T18 were both incompatible with life. The test showed T13.

Soon we found joy in every step of this. Through our tears your daddy and I hugged because along with finding your disorder we had been told that you were a boy. And your name changed from baby to Son. The doctor put pressure on us to quickly make a hard decision. He said he wanted to make sure we were fully informed of all of our options. He then explained that you would be lucky to live till birth and then if you survived birth that you would be limp, unable to breath, unable to eat, that you'd never talk, never love, never BE. not really. The doctor made sure to comfort us with the knowledge that we could always have an abortion, but that the cutoff date was coming fast and so we needed to hurry. He sent us home to think about it. Your daddy and I slept everynight with our hands on my belly. We talked to you everyday. We had already included you in every dream we had, every image in our minds and on our lips of our future. We were making plans for family visits, family trips, everything. Son, we used to rub you through the soft confines of my womb, and you lifted your head, or your foot in response. you used to kick your daddy in the ear. You already were our baby. How could we kill our baby?? Our precious son whom I already had outfits for that I had folded and refolded imagining what you might look like wearing. If you were to pass away anyways later, why end your life now? Why shorten your life even more? No. We decided to keep you. To love you unselfishly for as long as you would be with us. To make your life as comfortable as possible.

The doctors understood how we felt. But when discussing corrective surgery for your heart, it was never mentioned how common Tetrallogy of Fallot is in so called "normal" children, or how there are ways to overcome the challenges in feeding that clefts can cause. We were informed that we could travel to Denver, Colorado for delivery and have everything done. We were informed that everything was up to us. but it was all shaded a sad color. Everyone explained this to us in tones that suggested that doing so would be unmoral, cruel even. And we believed.

On July 11th 2008, we had you. I brought with me three outfits in preemie, NB, and 0-3mo sizes. According to the literature it was expected you'd have a low birth weight. But if you grew along the normal scale of a pound a week, you'd be nice and big. I had a scheduled c-section. It wasn't as scary or as risky as I had been told. When they lifted you from me and I heard your cry, your sweet cry, I was so happy. It was as if a new pathway in my brain had opened up. A new emotion, something like loveX1,000, something akin to when Einstein got the idea to write the theory of relativity. The earth shook, and the sun got brighter and my heart almost exploded. All I could say was "Oh! My baby" And your daddy brought you to me. You were all squished up, your cleft frightened me at first but I looked at you and I felt this overwhelming joy. I reached out to you, barely able to feel the movement of my own arm and I touched you. I understood why people call birth a miracle. because giving birth to a baby and feeling that love is the closest we get as humans to truly seeing the truth in the fabric of our world. Nowhere else is it written more clearly than in the eyes of a brand new baby that life is special, not to be taken for granted, never to be ignored or underestimated.

You were 19 inches long and 8lbs, 7oz. That was the first day our hope began to glow again. You drank from a bottle. Such a small amount, but it was so much more than they said. You held our hands, you looked around, you cried for me when I left to use the bathroom, you quieted in our arms. There was no doubt that you understood who we were and that you knew comfort. That you felt the love we gave to you. and you liked it. You were our little Daniel. The doctors were astounded, but not convinced. In Montana they never were. I'm sorry son, that we wasted so much time there trying to convince those stubborn people that you were worth their help. We had it backwards, they weren't worthy of even seeing you. The only doctor who really truly felt for you didn't take the initiative to seek more understanding for you. She failed you because she was too trusting of the stubborn cardiologist there.

We came to California with the help of resources found through this website. www.livingwithtrisomy13 We found out that there was a path for you that included more than just death, and all we had to do was push for it. So we did.

Our journey at Children's Hospital Central Ca was a challenging one. But Daddy and I knew that this was a place with the doctors who really could save you. We knew they had the knowledge, the expertise, the practice to save you, to monitor you, and to provide you with long-term healthcare so that we could do for you what needed to be done. Our struggle for you could be summed up as this: Our baby needs help, without it he will die. The doctors don't trust that they can help him because it just simply isn't done very often. So, what's the harm in looking. Get a clear picture of his health, discuss his options. and show them that If it is possible to save him, that it would be wrong not to. We helped your doctors to really SEE you. These doctors treat many children all the time. Their specialty is with challenging cases. Their jobs are to save those that can be. Not to put children through unnecessary turmoil that gets them nowhere. So we invited them to look into more than their holy grail of literature and seek the true stories of other survivors. We told them of this site, shared a few stories. Simply ages and diagnosis were enough to amaze them. Daniel, we did our very best to inform them and to encourage them. They took so much time doing tests. we were supposed to all meet and discuss their decision. but you heart stopped.

I feel guilty now thinking back about it. I left you at home with daddy so I could take a break. When I got home you were gone. I drove 20 miles over the speed limit all the way to the hospital praying to the gods of every religion I could think of. " Save my son. Please let the doctors at the e.r. not know his trisomy disorder so that they will save him. Please don't let him die. we are so close. I know we can save him. Put whatever thought that needs to be given to these doctors to keep them going. Inspire them. Make them help him." I could barely see through my tears. It is frightening the first time you see your child on a ventilator. It looks so wrong and alien. But as the hours drag on, sitting in the small hospital room in the picu puts things into perspective. You have a lot of time to think during those long hours you're unable to sleep at night. All I kept thinking was how my ob had terrified me talking about this very situation. How resistant everyone had been at first to our determination. But had I bothered to take a walk upstairs and actually see the icu, I would have known. When faced with death, having an I.V. central line in the leg of your baby is nothing. Daniel, had you been lying in that bed hooked up to those machines and I.V.s in recovery after heart repair surgery, I could handle it. I'd know that you would wake up soon. That this would only be temporary. But because of how long everything took, you were lying there after almost dying. Everyday, your condition worsened. When you should have been getting better your body was shutting down. I saw the CT comparison pictures myself. The tables had turned. Now the doctors were having to prove to me that what they said about you was true. I monitored your vitals closer than the nurses. They assigned you your own nurse. You were the only child on the floor with a nurse every shift just for you. They did everything for you baby. We all did. But you stopped fighting. I guess your strength just finally ran out.

A week after your heart stopped, it was clear that he best choice was to honor your right to die. We had fought for you to live, you were so strong, and now we had to let you die because there was nothing more to be done. your body was shutting down. You left us peacefully Daniel. I held you in my arms and we kissed you as you passed. We told you how much we loved you and how much we'd miss you.

You are gone now sweetheart. As I sit here in the middle of the night writing this, I'm crying. I'm remembering all of the good times we had. How much you loved taking a bath. How you were so smart and loved that book "When dinosaurs came with everything". How you slept so good laying on mine or your daddy's chest. I keep thinking about how the word possible really means limitless and how I should have just pushed the doctors harder. Maybe if I had we'd be
celebrating your 6 month birthday next month. (Jan 11th)

Your Mommy,
Felicia Doyle
*Daniel Miguel Gonzalez
*July 11, 2008 - November 25, 2008
*Full Trisomy 13

9-2-08
On September 13th we will be having a celebration of life party for our son Daniel Miguel Gonzalez. He was diagnosed with full T13 when I was 21 weeks pregnant. We were prepared by our doctors. we had his casket picked out, our family ready to be there at the hospital with us for what little time we might have with him. They told us that his condition was severe. Tetrallogy of Fallot, bilateral cleft, and more yet to be discovered. they told us about how "children with trisomy 13, they just aren't any kind of normal, that there is nothing anyone can do for them" we were told our son would be lucky to make it full term, to breath, that I'd never feed him, that he would be virtually a vegetable. I was hugged by EVERYONE. I had so much support from every woman who knew our story. so many tears shed.

On July 11th, 2008. at 8:18am, Daniel was lifted from my womb and made the most beautiful cry I had ever heard. Full term, Cesarean, 8lbs 7.1oz, 19 inches long, breathing, reaching for his daddy's finger. he scored an 8 on his APGAR. 45 minutes later he was nursing a bottle. there were so many moments of complete bewilderment for his pediatrician. like the one when he told me my son could go home with me, that he was wrong, that maybe he might actually live a month, not the 48 hrs he had told me the day before birth.

My high risk ob couldn't stay away from my recovery room. He kept bouncing in and out with the biggest grin on his face. We were the success story for him. The wonderful miracle. This doctor who lifted my son into our world had been there through everything with us. He knew our fears, hopes, and he understood the full breath of love we felt for our little baby boy. Our little baby Daniel. We gave birth to him in Billings, MT and were provided with the sweetest most comforting hospice support when we took him home to Bozeman, MT. The nurses were great, but we wanted more for our son. I demanded an echo and got a confirmation of diagnosis, and 1 1/2 hr of lecturing by the cardiologist on how our son was not worth surgery because of the statistics on t13 babies, mortality rates, severe brain deformities, etc. He told us he might not be able to handle anesthesia because of his brain, so I asked for an MRI to see if he had the possible brain malformations that made it so dangerous. We were told that they'd have to sedate him for that and he might not live so they wouldn't do it.

There was a huge paradox in my mind. IF THEY WERE REFUSING TO SAVE HIS LIFE BECAUSE HE MIGHT HAVE A BRAIN PROBLEM, AND THEY WOULDN'T LOOK TO SEE IF HE ACTUALLY HAD IT, THEIR PRESUMPTIONS WERE SEALING OUR SON'S FATE.

I exhausted our medical resources there, and then my mom found this website. She told me about Josiah, a 10yr old boy with the same ailments my son has and how he has doctors who treat him. There was no question after that except HOW DO I GET THERE TO CALIFORNIA?? I got some help from a very generous organization and before we knew it we were driving across Nevada.

Today my son is beautiful, healthy considering his disorder, eating, sleeping, pooping, peeing, smiling, interactive, reaches for us to pick him up, has ticklish spots, has doctors that have almost immediately set him up with specialists and tests.

He is a wonderful boy and we are celebrating how lucky we are to have him. I have a few goals that if God allows will set the standard for our lovely educated doctors: my son will speak, he will eat with his mouth on his own, he will walk, he will live to help us tell his story to anyone willing to listen, he will visit Disneyland, he will go to school even if I have to bring the teaching to him, and he will never be treated like a statistic again.

Felicia Doyle
f_l_doyle@yahoo.com