Emma’s Heart Story
| Told by her mother Shalonda.
Diagnosis: Truncus Arteriousus/DiGeorge Syndrome
With this pregnancy I did not care one way or the other; I just prayed it would be healthy. This pregnancy did not turn out as I hoped! At my first regularly scheduled sonogram at 21 weeks gestation I was excited to learn what gender our new baby would be. I, of course, like every mom wanted to get a head start on the nursery…so I needed to know what colors to choose. It was that day that we found out that our baby, our baby girl, would be born with a heart defect. The news was devastating!!! I wasn’t prepared for this. No one ever is. I know things like this happen, people have sick babies, but I had already had 2 very healthy children. How did this happen???? Was it something I did or did not do???? My husband and I went home and I cried for days and days! I honestly do not remember a day during that pregnancy after learning about her defect that I did not cry! At that point..do you paint the nursery or will she not make it? What do we tell our other children? The thought of her not making it fell on me like a ton of bricks! The not knowing! The doctors could not tell us for sure if she would. They just said, “we wait”. We wait until she grows more and at the next appointment they say, “we wait” and I continue to pray!!!! With help from my family and friends I reluctantly painted the nursery, bought the layette set had a shower (where I broke down crying while trying to tell them the prognosis). After that I would sit in “her” room and pray and cry. What would we name her? I asked my husband that question many times over. He didn’t want to name her “yet!” He didn’t talk about the situation much. I don’t know if it was too painful or if he thought, “If I don’t talk about it, it will go away!” After many months and much nagging from me we finally agreed on a name, Emma Peyton. I put her name on the wall in her nursery and continued to pray! The next few months were horrible and terrifying!! It was an emotional roller coaster! I could feel her moving inside me, kicking me, getting the hiccups! It felt like a “normal” pregnancy. We saw several different doctors at 2 different hospitals, who did several different echos (sonograms) on our daughter, while of course, still in utero. These were all to determine exactly what was wrong and how to deal with it when she arrived. We were finally told, I was 7 months pregnant at this point, that her defect was one called Truncus Arteriosus. A rare CHD. She also had very, very small pulmonary branch arteries (which would affect her oxygen). We were given several different diagnoses before this but this is the final one. With this new diagnosis her prognosis is GOOD. Her cardiologist said that it can be repaired but to expect more surgeries through out her life. So with this, like it is not enough to deal with in one day, my husband asks, “What will her life expectancy be?” The cardiologist says, in an upbeat tone, my oldest patient with this defect is doing great and will be 5 years old in a couple of months. Another ton of bricks! I am trying to be positive and not looking at the long term at this point. She can be repaired! They can fix her! The next several weeks I do all the research possible on Truncus Arteriosus. I want to know the cause, the outcome of surgeries, the life expectancy of children and all the other things that can come along with this defect. We did learn later that our surgeon has a patient that is 15 with the same defect. We were also told that about 50% of children born with a heart defect of this type usually have a syndrome called DiGeorge Syndrome. Again, those bricks! How much can one family deal with? This syndrome has variations. The symptoms can range from a person not even knowing they have the syndrome to completely mentally impaired. It also affects the immune system if they are born with out a thymus gland, which can lead to continuous infections. The question arises again…WHY MY BABY??? I try to concentrate on the heart defect and get through the surgery and deal with the other issues later. So on August, 28th 2007, my baby girl was born. I did not get to hold her at first…they whisked her away to stabilize her. We were told by all the doctors that she would be blue when she was born due to lack of oxygen caused by the defect. When she was stabilized they let me hold her for a VERY short minute. She was not blue, she was pink!!! She was screaming with what sounded like the most healthy lungs!!! She was beating the odds already! They rushed her to the NICU at Texas Children’s and did an echo to determine the severity of the defect. The diagnosis was still the same, Truncus Arteriosus Type 1. We waited for surgery.  As of today she, Emma Peyton, is doing great! She will be two years old in 1 month and 8 days. She is walking and talking and playing! She will have to have more surgeries to replace the conduit. There are other things that could have to be done as well but we don’t dwell on them. We take one day at a time! As for her DiGeorge….it has not affected her other than the heart defect. She is not delayed in any way. She does have the cupped shaped ears and has not gotten all of her teeth yet, which is a part of the syndrome. There are other things like learning disabilities and behavioral issues that may develop in the future but those can be dealt with. She does have a hard time gaining weight but that is true with most CHD kiddos. She is our pride and joy!! Even to her brother and sister! We thank God for each day he gives us with her. We pray for more research on CHDs and better medical technology every day!!!! If you want to read Emma’s full story during her hospital stay you can take a look at her Carepage: EmmaLowther or email me at Shalondalowther@sbcglobal.net. |
~Shalonda, July 2009 |
I was pregnant and excited! This would be our 3rd child. I already had 2 healthy children..one boy and one girl. My last pregnancy I hoped for a girl, since I already had a boy. To my joy, I had a baby girl.