Am I the only one who had PE and a Trisomy 21 baby?

Post On Saturday, February 25, 2012 By Kimberly

Am I the only one who had PE and a Trisomy 21 baby?

I got pregnant with my first son Ryan and got married at the age of 18.  I had one complication while pregnant with him, and that was I could not stop eating.  I ate everything I saw and well… it showed because I gained almost 75lbs with him.  Besides that self-inflicted mishap with Ryan I had nothing wrong in that pregnancy. My beautiful 10 lb, 3 oz baby boy was born October 4, 1996.   After a while of being married and having a new baby so young my then husband decided I was not the one for him, I enlisted in the Navy and off to the Gulf right after boot camp.   I met people went all over the world fell in and out of love and never remarried or had any other children.  It was just me and my son for 12 years and then I met Benjamin. After dating for a little over a year we married.  We thought about babies, but Ben had a boy and a girl, while I had my son Ryan who was only two years older than his oldest and his daughter a year younger than the boy’s.

I was now 34 and he 36, trying to start over did seem crazy, but we really wanted to have just one more together, we shared a common reason. That being, too see each other in a child... he said a little redheaded girl with blue eyes and I wanted a little boy with black thick hair and gorgeous baby blue eyes.  We were in love with each other very much and we both knew at that moment what was next, because before that we never; ever thought of having any other children.  We had enough love for 20 more.  So after the doctors told us we had very little chance of ever conceiving because he had low mobility and I cystic ovaries with a retro-verted uterus.  We told one another we will not use any birth control and let it be up to God either way we would be fine.

After trying for two years we were expecting our first child together.  We were so excited and told everyone at 8 weeks pregnant and everyone shared our happy moments of ultrasounds pictures and anticipated our son to be here a couple days after my 35 of birthday May 20th 2012.  Another boy and his name would be (Chance) Chanze Hunter Newman.  We were uneventful up until week 20; I had started gaining weight like crazy and stopped urinating almost all together.  I felt like I was sick with the flu with no temperature, my body ached so badly.  I could not sleep at night I tried putting 20 different pillows under me and took Benadryl to sleep, it never worked more than two hours because I could not breathe.  I went to the doctor and said nothing other than I felt horrible all the time.   We went over a diet plan as it seemed to be the culprit.  The doctor also sent us to MFM for genetic testing and an ultrasound.  Week 21 we went and it was the longest ultra sound I have ever had.  It was like days had gone by!  The tech stops after 45 minutes and shows us the baby’s neck and states that his nauchol fold was thicker than they liked.  She then went to his heart and showed us where he had a whole in the lower left ventricle of his heart soon followed over to his femurs that were shorter than most babies at his age.  He also had low amniotic fluid and low birth weight!

I wished God would take me now; I was not ready for this and neither was my husband ready to hear any of it.  Before we left they went over statistics of 1 in 25 that baby Chanze was Trisomy 21 with VSD (Ventricle Septal Defect).  They said to have an amnio done within the week.  I couldn’t bare to think how on earth I would ever take care of such a child.  Would I be enough for him and could I stand by and watch him suffer all the heart surgeries he was to endure?  It was a nightmare for both my husband and me.  He acted like nothing happened and it bothered me so much.  I thought does he not care!!????  But he did… I caught him crying later that week by himself.  We had a doctor’s appointment that Monday and we were going to have the amino the following week.  Come Monday we were at the hospital with a BP of 168/106 the doctor’s floored and the nurse’s assistants frantic.  I was told to go straight to NAS Jacksonville Florida as we were at NS Mayport and they could not help us because, up until this moment I was only being seen by a clinic and never had seen a doctor only PA’s I thought were doctors.  Not that they were any less competent.   My husband is in the Navy and I never thought for a second that if something was wrong that I would have to go an hour away to get help at another base!

So we went to Jacksonville and then was monitored for an hour for my BP and it stayed at 168/106 range but never going under the 140/90 range.  I was asked to pee in a cup and had blood drawn.  My feet, hands and face blew up like a blow fish and I was feeling worse by the min.  The doctor came in and told us that they too could not help us as I was a high risk pt because I had Pre-Eclampsia??!!!  What is going on here?  They started an IV and Magnesium Sulfate ASAP and called an ambulance to take me 15 miles away to a specialist hospital.

After getting to labor and delivery, they took me off all the IV’s and redid the new IVS and put a catheter in and ordered 24 hr urine; also took LOTS of blood.  As expected everything came back with levels no human being can have to sustain life.  My husband sat in his chair crying and me asking every question possible about what’s going to happen to my baby.  My husband never asked a single question about Chanze after they stated I could die at any minute.  Did he not hear the same thing I did??  Our baby was going to die if we couldn’t get rid of this disease and soon!!!  I told the doctor what are you going to give me to make this better??  He said ma’am there is nothing to make this “better” except to deliver your baby and he is not going to make it because we have to deliver prematurely to save you.  If he was 24 wks gestation NICU would respond but he is only 23 and one day.  We’re sorry he said.   I said that’s not true!  And I WILL NOT ALLOW IT!!!!  They said ma’am you won’t have a choice because we legally don’t have to choose between you and the baby at this point in your pregnancy……..Excuse me I said?  I am 23 weeks and 1 day.  He has a heart beat… five fingers … five toes; a big brother waiting on him at back home!  I said we can’t wait a week??  They said we are going to do one more test on you and one more test on him we are going to wait pending your results and his.  That’s all the time we have.  I said”ok what are they”??  You have another full panel blood test for liver enzymes and blood platelets we need consent for an amnio scheduled for tomorrow morning because as you know the baby had a several markers test positive for VSD and Trisomy 21 (Down syndrome).   I said “let’s get this done, why wait”?  Was God screaming at me to let him have Chanze back?  That night I went through the contemplation of putting my clothes on and going home so they couldn’t take my baby.  This is supposed to be God's decision anyway right?  I told myself if the test came back bad then I would do it.  So, I slept after that thought, I felt better knowing I could choose our fate and not some person that I had never even met.  Who were they to say they were going to take my child from me anyway?!

The next morning I would have my amnio and it wouldn’t be till Friday that we got the results back.  IT WAS TUESDAY!!   What was going to do with myself till then??  After the amnio I went back to my room to the best news I heard in two days, the doctor said “your results are back and everything is normal pertaining to your blood work”.  He went on to say that with a 24 hour urine like I had blood always comes back with very bad results, such as renal failure and all other organs failing soon after or worse seizures and or a stroke.   I was relieved and thought ok now let’s get pasted the amnio.  They even moved me from L /D over to anti-partum where I could walk around and no IV’s or catheter attached.  I was so happy I just knew in my heart and soul that everything was going to be ok, besides God always gave me exactly what I needed… ALWAYS.    One more night there and then I went back to L/D for BP spike.  They got it under control and soon enough I was back in Anti partum.  Wednesday morning around 6am, unfortunately I felt different, kind of like I had asthma.  I couldn’t breathe!  I knew it wasn’t a good sign so I keep it to myself!  Didn’t even tell my husband, but he knew.   He told the doctors and the doctors saw me struggling.

She ordered an MRI and a chest x-ray.  It came back Thursday and they said we can’t wait till the amnio comes back Friday, "Ma’am you have fluid building up in your lungs and we are out of time to wait.  We are going to start you on Lasik’s and plan to induce you tonight."  I knew I had to get out of there and soon or they were going to take my baby.  I looked over at my husband and he had no expression.  I was balling and I couldn’t breathe, as we waited for them to take us to back to L/D.  At 7pm the doctor who did my amnio walked in.  She also seven months pregnant, I couldn’t help but wonder why she was there.  The words sit down came out of her mouth and then I have the results of the amnio, which came back a day early.  My husband in his bed next to me, I sat up… she looked at me and all I heard was “99.9 % positive your child has Trisomy 21 with VSD”.   I started screaming and crying so loud nurses from the entire floor flooded in to see what was wrong, my husband holding me as I rocked back and forth screaming no.  I looked up to see my doctor crying as much as I was, brushing the nurses away from the room.   I only stopped crying because I was going to pass out and needed to hear what was to come for me and my family.  The doctor and I pulled ourselves together and let the questions start.  I knew they were going to induce me anyway but I had to know what it would be like for Chanze if I did get up and walk out.  She said if it were the 24 week NICU would come in and take over and when and if he survived after he got strong enough he would have many heart surgeries and more than likely would not survive them and it would be very painful for him and he would not have a life she wished on anyone.

IF HE MADE IT he would suffer?  Yes.  Benjamin and I made the next decision to go forth with the delivery.  Chanze was born Friday January 27, 2012 at 2:53 pm and passed away at 3:05 pm.  I could not bear to see him that way and Benjamin and his mom went to be with him till he passed.  I was given morphine and can’t really remember much after pushing him from my body.  I do remember trying not to watch them rush him away from me and saying to myself “How could I do this to him” Not hold him while he was dying and asking my husband and Mother-in-law to do it for me.  My husband later told me he couldn’t even hold him either.  His mother had to do it for us.  We as a family will never be the same, we can’t give anyone any money to fix this or pray really hard… It’s over and no one really got any say so over this… Cause if we did… Chanze Hunter Newman would be here today.  No one makes a choice to have their child die or patient for that matter.  Not the doctors nor Ben and I.  We all had to sit here and go through this and not one person making a decision, we only prayed for a chance. We love and miss our child and will never get over it.  We are forever changed and love the one Chanze we did get.

Views (1355)

Featured Video

Story Spotlight

Community Discussion

Trusted Partners

Attend an Event Near You

JOIN OUR MAILING LIST. We respect your privacy.