Hi,
My name is Debbie and this is the story of my Son Tommy, who now is 23. I know some are thinking why put this in with him so old now, but thought it would hopefully give parents of children an idea of what they may expect long term.
I was 18 when I had gotten pregnant and it was unplanned. I was 5′9″ and only 115lbs when i fell pregnant, with a history of anorexia. Obviously, I was very under weight and was told, “You really need to gain weight”.
Well, I sure did that! They did not do any ultrasounds during my pregnancy, so as far as I knew, everything was fine. We thought I was due October 12, 1984. I began gaining weight, and gaining and gaining. By the time I delivered, I had gained a whopping 96lbs. Still, we thought all was fine. In general, my pregnancy was uneventful.
On September 22 1984 about 8.30 in the morning, I started having, what I thought were labor pains. So, around noon headed to the hospital. Scared and worried cause he was not due for 20 days, but the Doctors said that was fine. As my labor progressed, it was rather uneventful, until my water broke.
When it did the mood in the labor room radically changed. Not only was the water very green, but a foot came barreling out and ripped me both inside and out. I can remember them rushing around the room, telling my husband he needed to leave. between crying from the pain and trying to get answers as to what was going on, I can still remember the looks on the nurses faces as they rushed me to the delivery room.
They immediately put me under general anesthesia. I can still remember starting to wake up from it and looking for my husband, who was standing next to me but did not see my baby. Did not hear any crying.
It is strange how I can close my eyes and still hear the doctor as he walked over to me. I did not hear, congratulations you have a son, the words I heard were “there are complications with the baby” I was like, what? What do you mean complications? Where is my baby! They proceeded to tell me that he was born with what was called gastroschisis.
I had no idea what they meant! Then they said, “Your son’s bowels are on the outside of his body.” To this day, those words still ring in my head. We have to transport him to another hospital for emergency surgery. Of course, I started to cry. It was a combination of ‘I have a son’ and “what? What do you mean transport, surgery?”
By that point, I was more aware of what they were saying and told them I want to see my son. They had already put him in the incubator and was on his way to the ambulance to be transported to the other hospital. Tommy was 5 lbs 7 oz and 20 inches long. I was taken to the recovery room, and sent my husband to the other hospital. Now, you would think that your parents would want to know you had there first grandchild. My relationship with them had been strained, as they did not like my husband.
The night before I had gone into labor, my mother had said to me “I hope the baby is born dead” Now, there was a very good chance my son may not live. I called hoping that when they heard, there attitude would change. My mother answered the phone, I told her I was in the hospital and had had the baby. Her response was “who gives a damn” Then my father got on the phone and started asking what you would expect, what did you have, how the baby is, how are you, which he did. I proceeded to tell him I had a son but there were complications. Well, I expected their support but, did not get it.
A little while later I received a call from the other hospital to fill me in on what was going on. It was then I learned there was more bad news. Tommy was not 20 days early, but rather 10 weeks early. He was also found to have pneumonia in both his lungs and they said, “We do not know if he is going to survive the next 24 hours.”
So there I was, a different hospital than my son was, all alone. His surgery took 5 1/2 hours and they just shoved everything back in.
The next morning, I told them I want to leave; I want to be with my son, who they still were very unsure if he was going to survive. They wanted me to stay because of the difficult delivery. I said, you can either release me, or give me the form to sign AMA. I was afraid my son was going to die and I would not get to see him, hold him or even touch him. They did release me.
Obviously, he did survive. It was a tough 12 weeks of him in the NICU. With how early he was, I did not have any milk so was unable to even pump for when he could eat. I spent every day, all day at the hospital. They had rooms in the professional building attached that we were able to stay at so we were close. It was a very long 12 weeks, but finally, he was able to come home.
Tommy was home for a week when it was discovered that he had an inaugural hernia, and he needed to be re-admitted again, for emergency surgery. I did not think I could take anymore. During the surgery, Tommy flat lined twice. What normally would be maybe a few days in the hospital, ended up a week in PICU and then another 4 days in pediatrics. Again, the doctors were shocked and he survived.
While growing up Tommy had a real problem with failure to thrive. He just could not gain weight. When he was six, we found out that three infants in the neonatal unit at the same time he was, had received tainted blood, with, you guessed it, HIV. Therefore, now it was time for another scare. Luckily, his HIV was negative. However, we did find out that he had CMV as well as Ebstien Barr. When they did x-rays, we found out that he also had a transverse malrotated colon. It explained why even now to a certain degree, he has a bit of a barrel chest. They had just shoved everything back in.
Growing up, he was always very self-conscious of the scar that is about 9 inches long. Even now, he avoids walking around without a shirt as is self-conscious.
Considering all his obstacles, He has done very well. Tommy is 6′3″ and is 145lbs, so still very thin. Recently he has had problems with one side of the incision occasionally having like a green oozing coming from it. why? Who knows. Currently they are talking about possibly having to go in and remove scar tissue as his is rather thick.
I was not lucky and did not have anything like this when Tommy was little. No contact with others with a child born with the same problem, no idea what to expect or support from others who understood what I was going through. Even with all his problems, I did have another child, 26 months later. A full term very healthy daughter who is now in the US Navy. Was I scared when got pregnant with her? Absolutely petrified! I had a total of nine ultrasounds, and a few scares with pre term labor.
Knowing that those of you that are having children now with Gastroschisis are lucky. They are finding it much more often while you are pregnant and it helps prepare you for what is to come, but you can never be prepared for an ill child.
You also have a site like this to talk to others whom have been through what you are going through and are here to talk to you about it, understand what you are feeling, and are here to listen.
Over the past 23 years I have spoken often with parents, either knowing there child has the defect and answered questions as a parent knowing what to expect, and even on about 6 occasions, been there for them, when there child was first born. Even being there for them when they have first gone into a NICU.
Tommy’s story is one, as your Childs will be, like no other child born with Gastroschisis. But, know, if you need someone to ask a question, or just to be able to call and be there for you, I would be more than happy to be as I have tried to give others the support which I did not receive. Know that now, the treatments are better, not rushed and so much more is known and understood than 23 years ago.
If anyone wants to ask me anything at all, please feel free to either email me or even IM me. Now, at 42, I am happily re married, and dealing with my own medical disability of Reflex Sympathetic Dystrophy for the past 9 years. So, I am on the computer a lot, both my AIM and Yahoo id is panthrvamp so if ever want to write or chat, please don’t hesitate, and if want to talk on the phone, just reach me via that email address or ID and would be more than happy to give you my number.
The best way to get through having a child with ANY birth defect, is to have someone to talk to, that may understand the exact thing you are going through or even just the stress of having a child in a NICU unit. I wish there was something like this for me when my son was little and growing up.
For those that are experiencing raising a child born with Gastroschisis, I hope that you find my story as one that says, you will get through it, they can do very well.
Blessed Be
Debbie
