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Maddie & Me Spreading Awareness & Offering Support's Details
Maddie & Me Spreading Awareness & Offering Support's Blurbs
About me:
Maddie's Heart Story
If you have ever sat down and read stories about Congenital Heart Defects then you have
heard most parents say that their child was diagnosed in utero or child birth. Sometimes
that is not the case. Sometimes CHD'S are actually silent killers. They have little to
no symptoms on the outward appearance but on the inside they are killing our children.
For my daughter,Maddie, that was just the case.
Maddie was born on a cold February day in 2000. It was bitter cold and snowing outside but
inside that hospital room where I was becoming a first time mom it was full of warmth and
love. My pregnancy had been pretty easy and all of the tests I had including ultrasounds showed that I was having a healthy baby. Miss Maddie was stubborn so I was induced. Her
delivery was after 23 hours of labor and Mom was worn out, but I forgot how tired I was
when the doctors handed me that beautiful baby girl. She had a head full of black hair
and the longest fingers. She was the most beautiful thing I had ever laid eyes on. I was
only 19 but I did my best to be the best Mother to her I could be. I took her to every
doctors appointment and took her a lot of times when she just had the sniffles to be safe.
At one particular appt when she was about 6 months old the doctor mentioned that she heard
a heart mumur but told me that it was from a PFO and would close as Maddie got older. I
said okay and we resumed our life. Maddie got older and she was doing well to the naked eye
but as her Mom I had several concerns. It seemed that Maddie got out of breath very easy.
She was most comfortable sitting and watching TV as opposed to bouncing around and being a
ball of energy like most toddlers. She ate well but she NEVER gained an ounce. As time
went on I became more and more concerned about her lack of weight gain and her getting
short of breath. I took her to the doctor when she was three and voiced my concerns. They
listened to her and said that they heard something very faint. They told me that this was
the orginal murmer she had from the PFO at birth. They explained that they give PFO's
at least five years to close before they become concerned. They didn't even seem to be
very concerned about her lack of energy or non weight gain.
I left the office that day feeling very uneasy. I decided to make it my mission to find out
if there was something wrong with my baby. I went home and got out a journal. I began to
note things that I thought weren't right. How much she played vs how much she would sit. The
fact that she would tire out so easily and what she was doing. The discoloration of her lips.
What she ate and what she weighed. After a few weeks I returned to the doctors office. I
gave him all of my notes and asked him to hear me out. He listened but he wasn't really
hearing me....he was hearing a mom who he felt was overreacting. I was Maddie's Mother...I
was listening to my Mother's Instinct which was given to me by God and it was telling me that something was wrong. As he
listened he decided to give Maddie a good physical. Once again he told me that he didn't
hear anything but the faint noise which to him meant that the PFO was closing. NOT GOOD ENOUGH!!!
Yes, those were my words to him. I'm so sorry but that is NOT GOOD ENOUGH! This is my child.
I want definitive answers. He told me that I could take her to UK Children's Hospital but it would be on my
own and I needed to call and make the appt. I left his office that day and very promptly called UK to set her up an appt with a cardiologist. The days spent
between that doctor visit and her appt at UK seemed to linger on. Then the day came in 2003
when I took her. I'll never forget that day as long as I live. We went in and they started
her ECHO and the technician got a funny look on her face. She asked Maddie to lay still. Then
she tried to be professional and tell me she needed to get something. The something was
another tech and I knew something was wrong. I was terrified. The second tech looked at
the ECHO and they asked me to sit down. They expained to me that Maddie had a hole in her
heart, an ASD they called it. It was not just the PFO that the doctors had originally told
me, however, a PFO existed as well. I wanted to faint. They explained to me that they
still thought it might close on it's own and they wanted to monitor her for a year! HA! Are
you kidding me? I had gone from being told that she had a small PFO which should close on its
own to being told that she had an ASD/PFO. I hugged her tighter than I ever had before and
carried her to the car. I called Timmy and sobbed on the phone. Then I went home and made
it my mission to educate myself about ASD's and Congenital heart defects in general. This was like a roller coaster ride to me
because I had never even heard the words Congenital Heart Defect much less had any kind
of education on them. The more I read about an ASD the scarier it got.
Here is some of the information I read
What is an Atrial Septal Defect?
The heart is divided into four separate chambers. The upper chambers, or atria, are divided by a wall called the septum. An atrial septal defect (ASD) is a hole in that septum. Atrial septal defects are one of the most common heart defects seen.
When an atrial septal defect is present, blood flows through the hole primarily from the left atrium to the right atrium. This shunting increases the blood volume in the right atrium which means more blood flows through the lungs than would normally.
If left untreated, atrial septal defect may cause problems in adulthood. These problems may include pulmonary hypertension (which is high blood pressure in the lungs), congestive heart failure (weakening of the heart muscle), atrial arrhythmias (which are abnormal rhythms or beating of the heart) and an increased risk of stroke.
Atrial septal defect signs and symptoms
In most children, atrial septal defects cause no symptoms. A very large defect may allow so much blood flow through it to cause congestive heart failure symptoms such as shortness of breath, easy fatigability, or poor growth.
Most often an atrial septal defect is diagnosed when a physician hears a heart murmur during a physical examination.
The murmur doesn't actually come from blood going across the hole, but rather from the pulmonary valve area because the heart is forcing an unusually large amount of blood through a normal sized valve.
The second heart sound is characteristically "split" which is different than what is heard when listening to a normal heart.
Diagnosis of atrial septal defects
Hearing a murmur on a physical exam is the most common reason an atrial septal defect is suspected. Echocardiography is the primary method used to confirm the presence of an atrial septal defect.
Echocardiography can show not only the hole and its size, but also any enlargement of the right atrium and ventricle in response to the extra work they are doing.
An electrocardiogram (EKG) may show evidence of thickening of the heart muscle and a chest X-ray may show enlargement of the heart and increased blood flow to the lungs.
Atrial septal defects treatment
In some children an ASD may close on its own without treatment. With a small atrial septal defect, this may be as high as 80 percent in the first 18 months of life. An ASD still present by 3 years of age will probably never close on its own.
Open-Heart Surgery
An atrial septal defect is most commonly closed by open-heart surgery. The surgeon may be able to directly close the hole with sutures or, depending on the size and shape of the hole, may need to close it with a patch.
Amplatzer Septal Occluder
Depending on the size and the area of the septum involved, many atrial septal defects may be closed by placement of a device called an Amplatzer Septal Occluder during a cardiac catheterization. This device, which was approved by the FDA in December 2001, is inserted through a catheter and covers the ASD by attaching to the atrial septum.
The benefits of being able to close an atrial septal defect with an Amplatzer device is that it can be put in place without stopping the patient's heart or utilizing cardiopulmonary bypass, it doesn't have the psychological trauma related to open-heart surgery and it doesn't create a scarring across the chest the way open-heart surgery does.
When you are just learning about this and you read Open Heart Surgery you just want to panic. This was my baby and we were talking about open heart surgery? I immediately called a doctor at Central Baptist, Dr. Carol Cotrill who had a wonderful reputation as a pediatric cardiologist and made Maddie and appt. Dr. Cotrill was very forward. She brought Maddie in and done an ECHO. Which she immediately told me was not good. She pointed everything out on the ECHO and explained to me that it was good that I followed my Mother’s Instinct because this was a very large hole and it needed to be closed surgically. She explained that the right side of Maddie's heart was very enlarged and she did not understand how Maddie was not on oxygen. She said that the pressures in her heart could not be good and that this was an serious matter. She refered me to Dr. Beakman at Cincinatti Children’s Hospital. My life was changing so quick. I went from being the SAHM of two and changing diapers to making doctors appts and thinking about open heart surgery. Dr. Beakman was very nice. He told us that he wanted to try to close this going through Maddie’s leg and avoiding open heart surgery. This sounded like a great option. He also told us that it was important we go ahead and schedule her surgery because he was seeing more and more strokes in young children from ASD’S. We viewed Cincinatti Children’s and met some of the people. I have to tell you that I think it is a wonderful hospital and I would take my children there anytime. It’s geared towards kids. However, I just was not comfortable with Dr. Beakman. If I was trusting my child’s life to someone I wanted him to be personable and I wanted to felt like he cared. We left Cincinatti and I began to pray harder than I ever have before. I asked God to show me the person who should do this surgery and who would take the best care of my baby. Then he answered me and he sent me to Kosair Children’s Hospital in Louisville,KY. I was sent to a man named Dr. Recto who was one of the few people around who also performed the surgery to implant the device through the leg. After only a few minutes meeting with Dr. Recto I knew he was the one. He was amazing. He explained himself and the procedure so well. He made a point to develop a realtionship with Maddie. He showed us around and he made us feel comfortable. He also made it very clear that if he started the procedure and could not complete it that emergency open heart surgery would be needed. He then introduced us to the man who does that, Dr. Austin. Dr. Austin was also wonderful. He explained what he would have to do if the device were to get lodged or if the hole was too big to close. I began to cry and beg them not to do it all in one day. If it could not be closed via heart cath then to let me bring her back for the open heart surgery. At this point I just wanted to hold her and cuddle with her.
We scheduled the heart cath and in April of 2006 it was preformed. I will never forget that day either. Dr. Recto was wonderful to me that morning but I couldn’t pay attention to anything. I was a mess. I was with Maddie to the very last second. I had to see her take that verset and get loopy. I watched them intubtate her and put her to sleep…then they rolled her away and I lost it. The minutes seemed to pass so slowly. It was only about 15 minutes into the procdure when they called out to tell me that Dr. Recto was coming out to talk to us. I was so scared. Was Maddie okay? What was wrong? Talk about scared parents…this was it…I was panicking. He came out and said Mrs. Morris can we talk in here for a minute. All of the family was jumping up. Everyone was so scared. I think I nearly fainted several times. Timmy was practically holding me up. I said….just tell me she’s okay. Which he did. He said she’s okay and they are waking her up now. You can see her in a few minutes. Then he gave us the bad news. He said….I have NEVER seen a hole this size in a child and I have been doing this for years. What appeared to be a small hole is actually the absensce of an atrial septum all together! He explained that when Maddie’s heart formed that only a small band of tissue formed in her atrium and that for six years her oxygenated and unoxgenated blood had been mixing. He said that her lung was extrememly enlarged and that he was very surprised that she was not on oxygen and having serious difficulty breathing. He told us about the pressures in her heart. He gave us photos and told us that from the transesopogeal ECHO that there was the absence of an atrial septum, a PFO and a PDA. She needed open heart surgery in the next few months!
That day changed my life forever. I walked to her room….grabbed her hand…laid my head next to hers and cried like a baby. WHY?? WHY MY BABY?? How could I have missed this? How could the doctors have missed this? I was so confused but one thing I knew for sure was that she needed this surgery. I didn’t want her to have it but if I wanted her to live she had to. You see it wasn’t a simple ASD that people live forever with that my Maddie had…it was that only a small band of tissue had formed so she actually didn't have an Atrial Septum and in time it would be fatal. I scheduled her surgery for July 14th, 2006 and I made every day about her. We done everything she wanted to do and we made some great memories.
On July 14th, Dr. Austin showed us just how amazing he was. He completed her open heart surgery in just a short period of time without breaking her septum. Instead he went through her ribs. We were so blessed that he was able to do it this way. He had a very trying surgery in front of him because he could not just patch a hole in her heart as with most ASD'S. Instead he had to build Maddie an Atrial Septum from Gortex. It is always so scary to hear that they are stopping your child’s heart. The minute I got that phone call I started praying hard and I didn’t stop until they called back and told me that she was off bypass and her heart was beating on it’s own again. When I went to her room she had so many tubes and wires hooked up to her. I was so scared. She wasn’t breathing on her own and she looked so pitiful. There was blood coming from her chest tube and they had restrained her little hands. I just sobbed. I sit down beside her the minute they told that I could and I didn’t leave that hospital again until she did, days later. She’s a little trooper and she had some rough patches trying to get well….but she fought hard and she came out stronger than ever.
Thankfully today Maddie is a 7 year old with a Mended heart. She has some trouble with heart rhythm from time to time and is still followed closely by Dr. Austin and Dr. Recto who I Thank God for. We watch her a little more closely because she was so sick for so long without any care. Remember that this wasn't due to my lack of taking her to the doctor. I took her to the doctor but they told me that she was fine. In this situation my mothers instinct was better than the degree that her pediatrician had obtained.
One thing that always stands out in my mind is that Maddie got really sick with the flu when she was 2, just before we found out about her CHD. I was terrified that she wasn't going to make it through this illness. Come to find out the reason she got so sick is because she was immune suppressed. This was another clue to me that something was not right. Always pay attention to your children and to things that do not add up. We, as parents, are our childrens best advocates.
So, when I say that I am on a mission to raise awareness and educate people about CHD’S my friends, this is why. If it were not for me following my Mother’s instinct, my daughters CHD could have been fatal. The entire time her doctors were telling me not to worry about it. Doctors DO NOT always have the right answers and they do not know everything. The best defense we have is knowledge and the more knowlegeable we become about these illnesses and silent killers that affect our children the better armed we are to deal with things like this that come our way.
I hope that this story will inspire you to learn more about CHD’S and other chronic illnesses that plague our children today.
Below are some of the children who are plagued by these illnesses. They are friends of Maddie and Me and they are some of the children that we are fighting for education and awareness for.
I will be adding blogs (so subscribe) about these illnesses which include
CHD’S
Asthma-which my Son suffers from
Allergies
Albinism
ADHD
Exzema
Cancer
Sensory Disorders
Autism
Pregnancy and Infant Loss
SBS
RSD
We also support homeschooling, SAHM'S, religious themes
And many more…..please help support us in our fight to raise awareness. Add our banner to your page. Tell others about our site. And please check out our gallery on Zazzle…these designs are made by my daughter and our family. We sell these products in an effort to help raise awareness and make a difference for our children. If you have a little extra cash and you can purchase something from us…you are helping us to make a difference. Feel proud. Remember, we are ALWAYS adding new designs so keep checking back.
We also want to make ourselves available to anyone who comes by our page and has questions or concerns. Please feel free to contact us by email at
maddieandmeoriginals@windstream.net
We will get back to you as soon as we can.
Thank you for stopping by our page.
Here is another slideshow with a window into the world of CHD'S and why we need better awareness. Maddie is featured in this video along with many of her friends. Thank you CHD Heart.
Who I'd like to meet: Why Maddie and Me Originals? Well after Maddie went through this battle with her CHD we decided that we wanted to help others. Maddie wanted to help by sending things to children who were in the hospital or offering things for others to send to sick children. I wanted to help other parents and families from being thrown on a roller coaster ride blindly. So, we decided to start Maddie and Me Originals. In doing this Maddie is able to use her God given gift of being artistic and make designs. We apply these designs to products which others can buy. If you notice....we pay attention to the coffee mug our neighbor uses or the tshirts the people in the shopping center wear. When we see something that we haven't heard before or haven't thought about much it sparks us to think about it and learn more. We hope that our designs will bring attention to these illnesses and help others give them a second thought. We are also taking part in an awareness heart sponsored by CHD Heart and hosting it in our area. We are making slideshows and blogs on our pages and reposting bulletins to bring attention to these illnesses. We are in the process of setting up some things in our local community to help bring awareness. There is always something in the works and your support emotionally, spiritually, financially and by your friendship helps us achieve our goals. Maddie is very happy when we add new designs and when she sees something has sold. This helps my precious little girl learn about being compassionate and helping others at an early age and with the way the world is today I think that is very important. Maddie is homeschooled so that gives us more opportunities to work on our designs and focus on positive things instead of the negativity society is offering. She loves Maddie and Me Originals and is very proud of her achivements. Her Father and I are very proud of her as well. Please help make her mended heart smile and help us make a difference.
Thank You.
Here is a slideshow of some of the items we offer on Zazzle. They include
Mugs
T-Shirts
Bags
Keychains
Stickers
Pins
Cards for all occassions
Postage and much more
Please visit our zazzle store today to support someone you love with an illness or just to show your support for a very special little girl who is trying to make a difference.
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Maddie & Me Spreading Awareness & Offering Support's Friend Space (Top 36)
Maddie & Me Spreading Awareness & Offering Support has 1208 friends.
hey there! hows it going? how are the kids doing? aubrey is going to have open heart soon. she had a cath to balloon out her stents in her pulmonaries and took pics of her aorta, and seen that she has 2 more coarctations, so they are going to do open heart to fix her aorta. as soon as we know when, i will let you know. please pray for her.
Hi KWIN is holding another fundraiser for the heart kids, Could you pleae check out this link http://www. kwinbabyidol. com/vote. aspx?Id=3879 and vote for out baby to win Thanks,
