Lorenzo

Lorenzo ~ Full Trisomy 13 ~ Born:  July 22, 2007

 Hello,my name is Imelda Castro. I am the proud mother to a wonderful,full of life,loving angel on earth with full trisomy 13. Lorenzo was born July 22,2007,he was born to a loving family. But he was not pre-diagnosed or was I aware of his cleft,because he wouldn't show his face to us in the ultra sounds or sonograms. So we didn't know anything,all we did know was he was a boy and going to be born healthy. The moment he was born is when we saw his cleft,I have a cousin that was born with a cleft palate and cleft lip so I was aware of the life of surgeries he was to go thru,but my cousin is 32 yrs old now and doing well.

So I started crying because of this cosmetic surgeries that were coming,not aware of the disorder that was going to be introduced to us days after he was born.do to my stress and shock I couldn't see my son until I ate and was stronger. He was in the NICU,so I hurried up and ate and went to see my son for the first time since birth,it was the next day around 1 pm when I got to c him. I saw him and couldn't believe he was there and then noticed his extra toe,rocker bottom feet,bilateral cleft lip and palate. He looked so lonely and wasn't allowed to hold him. I cried but was happy to c him,then I recovered so well that then thy decided I could go home(I wanted to scream, because if I had known that I would of not eaten well, lol,) we went home but was told I could come back in and the unit is open all the time I could stay with him,so I did left hospital then turned and said ill be right back. My husband was with him and he got the news there all alone. Came home so I could go and stay the night. But entered the door with tears,I screamed and asked him what was wrong. He told me what doctors told him and I was so shocked and didn't know what this disorder was. Just left to hospital and doctor came to explain to us what it was. The words incompatible with life were so stabbing. I wanted to hold my baby,at least once,because wasn't allowed to hold him because he was jaundice. I told them so I need to hold him,what's the point if thy r telling me he isn't going to live. I held him so close and dearly that he looked at me and all I did was cry,but wasn't going to leave him alone. We took turns daddy days and me nights. Lorenzo wasn't keeping down his milk,thy tried different milks nothing working. Then thy told us about the g button. At 2 wks old he had it inserted,but before surgery thy take X-rays and discovered his intestines were malrotated. So had to have 4 things done, malrotation, fundoplication, appendix removal and g-tube insertion. At 3 wks he we were told to take him home for comfort time with family. They made us well convinced us to sign a DNR,so we did but were aware of revocation ar any time. Once home he went thru a lot. I ignored DNR and did CPR myself .when he was 4½ months old,he coded on me,I did CPR and called 911 my parents lived down the street so thy rushed to me. Brought him back and sec later he stopped breathing again,I told my sis time it,I did CPR for 12 min but never giving up on him. He came back to me,took to hospital and doctors told me y did I bring him back,u r just prolonging the inevitable. Once at home,alone in the bedroom with him I talked to him and god,I asked god"if ur angel is meant to stay here on earth please leave him,if he isn't meant to stay please take him when I am trying to bring him back. I don't want to be selfish and keep him here if he is only to suffer and go thru pain if not necessary,I will stay here and suffer the pain of loosing him and keep living for my other two kids. But if u have a purpose for him to stay on earth,please allow him to stay and I will do my best to fulfill his journey in life". I held my hands up and said"Dios te entrego a mi hijo".(I give u my son back to u). The hardest thing for a mother to do but something I had to do,in our tradition is known that our babies are only lend to us and at any moment he wants them back we r to give them back. Being so hard for me to do I did do it and god has blessed me with my son here on earth now 5½ yrs. He went thru so much in the first yr of his life,with so many doctors denies,negative words and refusal to do anything for him. But between my husband my family and myself we

learned what to do for him and learned so many things that we ended up telling doctors what to do. And thy were shocked because how would we know what to notice or how to figure him out. It took sleepless nights 24hr supervision,care and most of all LOVE AND CARE, we have had doctors apologize for being so hard to him,not wanting to do anything for him and seeing him only as what books teach them. Thy apologize to him personally with tears in their eyes and tell us to continue to love him and do what we r doing for him because we seem to know him better and know how to love him unconditionally. For all these yrs he has had people come and go from our home and once they meet him they have a smile and when thy come back or I hear from them they tell me that Lorenzo has changed their way of thinking,feeling and look in life. So yes I believe he is fulfilling his purpose in life as god has meant for his journey in life. They haven't been wanting to do cleft surgeries because they  tell me that the team of doctors will not take the chance,but they also tell me,just like with any kind of surgery,operations there is always a risk. Well then why is my son not considered if with anyone it is always a risk when put under anesthesia? Thy don't know what to say,but I believe that if god wants this he will make it possible and with patience I have been waiting for the sign he will put in front of me. He does not sit ,stand,or walk without assistance,but does with assistance. He is a wonderful,amazing,happy,funny,own personality,little guy. He brightens my everyday and makes a lot of people's day. He truly is a blessing!! This is just a very,very short summary of our journey in this amazing life we live. I love my life and journey.

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa  

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