May 16th I was 38 weeks pregnant. I was so happy to make it this far in the pregnancy it was a long hard road but I did it with the help of 26 weeks of weekly injections, weekly appointments with ultrasounds along with NST monitoring. That morning I had received a call from my Doctor she told me my test results were and I was developing preeclampsia, she advised me to go straight to L&D to be induced.
I called my husband Dylan at work and got the children situated my 16 year
daughter was to care for my 5 and 3 year old sons while I was having Cole.
Luckily the hospital was only 4 minutes from our home making it easy for the
Dylan to go back and forth.
daughter was to care for my 5 and 3 year old sons while I was having Cole.
Luckily the hospital was only 4 minutes from our home making it easy for the
Dylan to go back and forth.
It was 6:30 pm before the hospital staff got around to hooking up the medication
for the induction. Dylan and I were so elated to meet our newest Son in a matter
of hours. The labor didn't last long. 9 hours later May 17th 2013 @ 3:11 am
Cole Anthony was born 6 pounds 5 ounces 17 1/12 inches long. He let out the
faintest of cry's while the nurse wiped him clean on my chest. He was perfect
and looked just like his brothers. Dylan and I couldn't of been and more happier.
We were blessed with this perfect little human 10 fingers & 10 toes.
for the induction. Dylan and I were so elated to meet our newest Son in a matter
of hours. The labor didn't last long. 9 hours later May 17th 2013 @ 3:11 am
Cole Anthony was born 6 pounds 5 ounces 17 1/12 inches long. He let out the
faintest of cry's while the nurse wiped him clean on my chest. He was perfect
and looked just like his brothers. Dylan and I couldn't of been and more happier.
We were blessed with this perfect little human 10 fingers & 10 toes.
I stayed my 24 hours in the hospital and it was now May 18th a Saturday and I was ready
to take Cole home.The other children were so excited for us to get home. Dylan had just came
with the car seat and I was signing all my release paperwork. I had been cleared to go and so
had Cole we had both received a clean bill of health or so we thought.
to take Cole home.The other children were so excited for us to get home. Dylan had just came
with the car seat and I was signing all my release paperwork. I had been cleared to go and so
had Cole we had both received a clean bill of health or so we thought.
The last protocol was for Cole's Pulse Ox to be monitored. We wanted it to be 94 or higher.
I thought nothing of this test and carried on with packing up. The nurse hooked up the
monitor and stayed for awhile shaking her head. The monitor was showing a oxygen level of 84
the nurse assured me that she must of been doing it wrong and brought in a new nurse with
her and a new pulse ox machine. The test was redone but the same outcome
I thought nothing of this test and carried on with packing up. The nurse hooked up the
monitor and stayed for awhile shaking her head. The monitor was showing a oxygen level of 84
the nurse assured me that she must of been doing it wrong and brought in a new nurse with
her and a new pulse ox machine. The test was redone but the same outcome
a 84 was showing on the monitor. The nurses tested themselves and the monitor read 97
obviously the monitor was working correctly.
I asked what the next step was since they couldn't release him until the oxygen level
obviously the monitor was working correctly.
I asked what the next step was since they couldn't release him until the oxygen level
ready 94 or higher. They advised they would wait an hour and retest and if it still wasn't
showing a 94 or higher an Echo Cardiogram would be order. They left the room and called
Cole's pediatrician.
showing a 94 or higher an Echo Cardiogram would be order. They left the room and called
Cole's pediatrician.
All the sudden the nurse came back into the room and said Cole's doctor ordered the Echo and Cole was taken to the NICU to be given oxygen to boost his oxygen levels. I was confused and didn't know what was
going on. Dylan went with Cole while I waited for my final discharge instructions for myself. The nursed assured me everything would be okay and it was probably nothing. After everything was signed I went straight to the NICU. They had him hooked up giving him oxygen through his nose. The NICU doctor introduced himself and advised the Cardiologist would be there within 30 mins he was coming from Tacoma.
Dr Park the Cardiologist arrived exactly within 30 mins and introduced himself to Dylan and I. He said this is just protocol and usually they find nothing and sometimes they do. The Echo would rule out a heart defect and he started to preform this on my 1 day old son. I was terrified but he advised he would only talk during the test if he found something wrong. The Dr was very quite for about 30 mins the NICU nurse had asked a question and he repeated "if i find something I will talk!!!" Within 5 minutes he was talking to the NICU doctor and the nurse. They were pointing to the screen and going over we could do this we could do that plans of attack to each other. The tears started pouring down my face I thought I was going to pass out.
Dr Park Closed his computer and turned to Dylan and I and said the words every parent fears. Cole has a heart defect and it called Total Anomalous Pulmonary Venous Return with an Atrial Septal Defect.
How did the Doctors miss this when I was pregnant I went to so many appointments so many ultrasounds. I went to a Fetal Maternal Medicine Specialist who did my 12th and a 20 week anatomy scan. How the hell did they miss this, told me my baby was fine i'm furious..
Nothing made sense and my whole world as I knew it stopped. My baby was sick and he will need open heart surgery to fix the heart defect or he will eventually die. How do you prepare yourself or family for this??? No question about it the
surgery will have to be done. He will need to gain more weight before the surgeons can do the surgery. I'm scared and lost wishing this was all a bad dream. In the next weeks to come I will know more and will have a date for the surgery. As for now Cole is home and I love on him daily and thank God everyday he wakes up and I see his precious face.
How did the Doctors miss this when I was pregnant I went to so many appointments so many ultrasounds. I went to a Fetal Maternal Medicine Specialist who did my 12th and a 20 week anatomy scan. How the hell did they miss this, told me my baby was fine i'm furious..
Nothing made sense and my whole world as I knew it stopped. My baby was sick and he will need open heart surgery to fix the heart defect or he will eventually die. How do you prepare yourself or family for this??? No question about it the
surgery will have to be done. He will need to gain more weight before the surgeons can do the surgery. I'm scared and lost wishing this was all a bad dream. In the next weeks to come I will know more and will have a date for the surgery. As for now Cole is home and I love on him daily and thank God everyday he wakes up and I see his precious face.
Oh sweetie. Hugs. I am a heart mom as well; I understand your shock. Keep the faith, everything will be ok.
ReplyDeleteCorbin's mama. Thecorbinstory.com.
My 5 yr old daughter has partial anomalous pulmonary venous connection with ASD. They also did not find it on any ultrasound. The drs told me the reason for thesis basically they look for 4 chambers and if they see all 4 then they don't worry. Well, this defect they still have 4 chambers....just funky chambers! Her ox was also 83-85. At her week check up her ped heard a very loud murmur and had us come back at 2 weeks. The murmur was just as loud so as a precaution she sent us to primary children's in slc. They did echo, EKG, EEG, X-ray...we figured it was probably a hole in her heart and an easy fix. Nope. We waited for her to gain more weight before they did her surgery too. She was 1 yr and 3 weeks old, 17lbs when she had her surgery. They also wired her for a pacemaker. She is doing great and still does not have the pacer yet! Good luck momma! These kids are the toughest!
ReplyDeleteMy son had Total Anomalous Pulmonary Venous Return. But unfortunately, it was not detected in my monthly ultrasounds.
ReplyDeleteMy baby was born on 12/12/12. Weighed 6lbs 12 oz and looked perfectly normal. I was happy when I was discharged from the hospital to bring home my FIRST baby. During the first week, my boyfrined and I noticed that our baby would have episodes of fast and heavy breathing, so my boyfriend recorded the breathing. For my baby's first checkup, we showed the pediatrician the breathing....and he said it was "normal." Days later, my son would breathe the same. Then, my son went from eating 3oz to 1oz, the pediatrician said, " he's the boss, he'l let you know when he's hungry," OK..... then my son started throwing up every day. Again, I told the pediatrician about another concern, and I was told " spit is normal," I explained to him that it was NOT spit.
My son passed away on January 25, 2013 in front of me. He started crying so loud and his ear was turning blue. The paramedics took him to Cedar Sinai in Los Angeles. I was not allowed in the room, so I was waiting outside the room. About 30 minutes later, I was told I could go in. I saw my son laying there, hopeless and naked, but I thought he was okay, since no one told me anything while I was waiting. I was then told I could walk in, then of the nurses just gave me his hand, and I started crying and screaming.
I asked for an autopsy because I wanted to know what my son had passed away from. When the coroner told me it was Total Anomalous Pulmonary Venous Return and that ALL the symptoms I had mentioned to the pediatrician about my baby, he SHOULD have referred my son to a cardiologist because all those signs were NOT normal. I cried and cried and still cry.
Because I did not know anything about congenital heart defects, I started to do my research and educated myself on it. I have since made a page in memory of my son https://www.facebook.com/InMemoryofAlejandro ...where I also talk about the Pulse Ox.....and ask pregnant women to ask for it or tell people to tell pregnant women of it....because I WISH someone had told me about it.
Although my son is not physically here with me today, I know what you are going through. Stay strong, pray, and be right by your son because he needs you.
Cindy, I'm not sure if you are following this string any more, but I was just rereading your post. I have been moved to serious action because of your baby. We were already starting some efforts with pediatric and GP offices, but this must happen urgently. Just know that there are talks right now with the AAP and their guidance protocols to ensure a baby coming in with symptoms he had WOULD receive a pulse ox check in the peds office. I also wanted to tell you, our baby Eve was born in 12/12/08. It gives me goosebumps that they share the same birthday. Prayers for you. I hope we can keep in touch. Here's my email: annamarie@1in100.org. Best, Annamarie
DeleteThank you. Yes, I will keep in touch.
DeleteThank you for sharing this story...so many of us with post natal diagnoses think that! How did this get missed on the ultrasounds?? What the..??! But you are so fortunate that the screening was in place, and it worked. There have been 3 babies with this diagnosis (in 3 weeks time) after failing their pulse ox test. Thank God your baby will get the intervention he needs. This is a highly successful repair. And Dr Park is fantastic.
ReplyDeleteCindy,
ReplyDeleteI'm so sorry for your loss....I felt nauseous reading it. How many times do parents need to go to pediatricians with these symptoms and get turned away? I do believe this is the next required education campaign. It can't keep happening. Pulse oximeters should be required in every ped/GP office... And a check list of signs and symptoms of CHD.
My daughter has HLHS and we did not know she was sick before she was born. Her defect was found the day after she was born. She is now almost 5 and doing very well. She's had 3 heart surgeries and you would never know it!
ReplyDeleteI too am a heart Momma, I understand your pain and shock. I'm so sorry. We will be praying for you and Dylan and Cole.
ReplyDeleteIsabella's Momma
Isabella has HLHS and has had 2 of the 3 stages of surgeries. She is beautiful and smart and funny. God bless
Thank you for sharing your story. I am a heart Momma and a nurse. I have had pretty detailed conversations with our cardiologist about the prenatal ultrasounds. Total Anomalous Venous Return is hard to see before they are born. It really only becomes obvious when they are born and their heart has to work on its own. My sweet son had surgery to repair TAPVR when he was 2 days old. It was the most terrifying experience of our life. He is now a healthy 9 year old. I am praying your your little one.
ReplyDeleteHi my son also as this when he was 6 weeks old he was so ill his breathing really pale so i took him to the doctors kept saying he had a cold then he started losing weight beening sick all the time so took him bk to doctors the said just a cold so i took him up hospital and them to amit him till they found out what was wrong they kept him for a week then took him to southampton for a better scan that when they found out that he had this he was only 6 weeks old weighing 5lb he was that ill they hat to do a opperation that day they said if it was left till the next day then he would of died his 21 now and doing well but none of this was picked up in any of .y scan either
ReplyDelete