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Archive for the ‘A Kurdish Princess and her Heart’ Category

February is Turner’s Syndrome Awareness month. And this week is Congenital Heart Defects Awareness week Feb 7-14. While many chd’s causes are unknown, some are due to having a syndrome. One syndrome that often has some sort of CHD associated with it is Turner’s syndrome. Turner’s syndrome only affects girls. Only 2 percent actually survive to birth. The chd’s they may have vary, with many having none at all. Here are the stories of some of them, including my daughter Sajda’s.

Sajda, 2 end of the month :)

Sajda, almost 2

Sajda has Pulmonary Atresia with VSD. She had open heart surgery at 5 days old to do a full repair, they closed her vsd and put in a conduit for her pulmonary artery. At first we only knew about her heart issues and only later did we find out through her genetic testing that she had Turner’s syndrome. She has the mosaic form, meaning some of her chromosomes are two XX and some are one X. So far the heart issues are the biggest thing we have had to deal with. She will need to see a cardiologist for life. She will need more surgeries and intervention down the road. But for now…she is a busy, thriving, trouble-making two year old :)…on the 24th that is.

Ivy, 2

Ivy, 2

Ivy was dx with Turners Syndrome at 16 weeks gestation, we suspected a heart defect, but it wasn’t confirmed until she was 2 days old, coarctation of aorta. She was transported to UCSF that day and had her repair at 4 days old. She currently see’s her cardiologist once a year and has a healthy functioning heart.

Juliana Grace Rose

Juliana Grace Rose, 20 months old

Juliana was born at 35.6 weeks on June 2, 2011 after surviving a cystic hygroma and hydrops in Utero. We knew she had turner syndrome but several fetal echos couldn’t distinguish what exact heart defects she had. The morning after she was born she had an echocardiogram and it was discovered she had coarctation of the aorta, hypo plastic arch, and a unicuspid aortic valve. She was immediately prepped for transfer to The University of Michigan, Motts Children’s hospital. At about 20 hrs of age she started declining rapidly and started going into heart failure. She had open heart surgery at 3.5 days old to repair her CoA, and fabricate a synthetic arch. She was hospitalized for 5 weeks. Her subsequent echos have discovered aortic stenosis as well as a dilated ascending aorta. However she is stable so she was recently cleared by cardiology to be seen every 6 months instead of 3! She is very funny, energetic, active, and playful. You would never know that she was born with heart defects. Our little miracle girl for sure!

Aubrey Lynn, 2

Aubrey Lynn, 2


One of a set of identical twins with mosaic Ts. At a day old we were told Aubrey had a bicuspid aortic valve, and that she wouldn’t hopefully need intervention until teens or even her twenties.  People can go their whole lives without even knowing they have a BAV. At two months old we had her first follow up & learned that her heart would not follow the normal bicuspid aortic valve path. We were told that she had already developed a high moderate level of aortic stenosis and as a result of her heart having to pump extra hard she also had developed left ventricular hypertrophy. At four months old, her next follow up, the stenosis increased slightly and they saw a small hole that hadn’t finished closing yet. Her stenosis was at 65MmHg & he told us she would have balloon valvuplasty at 70MmHg. His only concern was that being as small as she was that her valve would start to regurgitate and need replaced after the balloon valvuplasty. He gave her another two months time to see if it changed. This was around the time we learned her twin also had TS, but her echo showed no cardiac abnormalities.
When Aubrey was six months old we learned that she had mild aortic root dilation, but thankfully no change in her stenosis. He bumped her to four months. At ten months old we learned that she had an extra left superior vena cava & that her aortic valve had begun to calcify, but again everything else remained stable.
At her last check up at two years old we found that her hole was almost completely closed, the size of the left side of her heart was going down, and that her stenosis had actually improved! She was now at 37 MmHg. There was no change in the aortic root dilation. At this appointment she was cleared for growth hormone therapy when her endo decides to begin them. We were told that would more than likely be this May. So far she is projected to be an end height of 4’4″ without GHT. Once those begin she will go back to cardio check ups every three months. We are very hopeful that she will remain stable and gain a few extra years before requiring a valve replacement. He said we may not make it to her double digits in age before needing a replacement, but I’m just grateful for the extra time before surgical intervention no matter how long that may be.
Lily Brigid

Lily Brigid, 16 months old

 Lily is 16 months old and has Classic Turner Syndrome. She was diagnosed with Turner Syndrome at 16 weeks in utero and they discovered possible heart defects at a fetal echocardiogram done at 24 weeks. At 31 weeks it was confirmed she had an aortic coarctation. She was born at 36 weeks 3 days, and after birth they decided to repair the coarc through a thoracotomy, at which time they also reconstructed the aortic arch, 2 days after she was born. She came home when she was 12 days old. Lily also has a bicuspid aortic valve and an abnormal mitral valve that at this time just require monitoring. At 4 months of age, she had a balloon dilation done to further correct the coarc. Now, she just requires monitoring by a cardiologist every 6 months, and is a happy-go-lucky little girl. She is so cheerful and such a joy to be around, and we are so thankful for our little miracle!
Teagan, 6 months old

Teagan, 6 months old

Teagan was diagnosed in utero with Hypoplastic Left Heart Syndrome, a condition where the left side of the heart does not develop and does not work effectively. She has had two surgeries in a series of three, the Norwood and the Glenn.


					

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Check out a guest post on a friends blog that deals mostly with Turner’s syndrome…I wrote an article about Sajda having Turner’s and a congenital heart defect. This was part of Turner’s Syndrome Awareness month for this year.

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The worst day of my life was on the 5th day of my daughter’s life…

First, I couldn’t be there…and that in and of itself was pure torture.

2nd, although I knew she needed this surgery, it still was really hard to accept that at 5 days old she was going to be undergoing a very serious and complex surgery.

The day before I had to sign consent to the surgery.  A new pediatric cardiac surgeon at Vanderbilt explained the surgery, intially a bt shunt, but due to her arteries being ample size, they decided to go with the full repair.  They would place a conduit and repair her VSD.  The surgeon had a kind demeanor and answered all my questions.

I then signed the hardest signature I have ever had to sign.  I was placing trust in them that they would be successful, and my ultimate trust was that God would give her strength and heal her heart.

That night I don’t think I slept that well.  All I could think about was that Sajda had not even opened her eyes yet in her short life.  She was so weak those first few days.  She had purple hands and feet.

During the surgery they gave me frequent updates.  When they took her back, when they put her on the heart lung machines, when they started, and all through out the procedure.   I am grateful that they gave me those updates.

I was at home, and spent most of the time in bed, I think that was the only way I could handle not being at the hospital with her.  I regret not trying to find someone to watch my son, but honestly I didn’t have the ability to really think it out cause I was just trying to hold it together, be strong for her, be strong for me, and still care for my other four children.

Finally after hours, I think a total of 5-6 they were done.   They were really happy with how the surgery had went and she was doing good by all accounts.   I could not wait to go see her.  I called my husband and asked him to pick me and our youngest son to the hospital.  He picked us up and dropped us off, but due to work he couldn’t stay.   We waited for what seemed forever and finally they let us come back and see her.

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When I first saw her, I almost didn’t recognize her if it wasn’t for her Mohawk hair LOL.   She was so swollen from her head to her toes.   She had so many wires and tubes.  Her chest had been cut open and closed.   Her skin was yellow tinted and looked drained of life.   It was hard not to be disturbed by her state even though she was doing well.   I tried to be brave even then, but it was hard to see.  Yet for me there was no other place I would rather be than with her.

For her daddy, it was too hard to see.   Everyday I would go see her but he couldn’t bring himself to see her like that.   I think that he knew I was looking out for her for one.  I was almost mad at him, but then I asked him about it.   He almost in tears talked about how hard it was to think about his new daughter going thru this, barely hanging onto life, not yet opening her eyes.   He wanted to see her, but preferred to wait till she was extubated and breathing on her own again.   So I went alone and spent time with her because it helped me to do that.   And everyday she improved little by little.

Every night before bed I would call the nurses to check on her.  Then whenever I woke up in the early hours of the morning I would call again.  And later in the morning, usually after taking the boys to school, I would go to visit her for an hour, pump some milk to deliver to them and also eat my breakfast with her.

Finally she opened her eyes!

Finally she opened her eyes!

And then was extubated!

And then was extubated!

And then finally she saw daddy.  And I think it was love at first sight.   She stole his heart that day.

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I have loved being a mom to 4 boys till now….I grew up a tomboy myself amongst brothers and male cousins.

But in the back of my mind I always wondered how it would be to have a little girl.  Each time I had a pregnancy I would anxiously await the ultrasound to see what the sex was…and the boys never failed to vividly show that they were 100 percent boys 🙂  This pregnancy I went into it thinking that boy number 5 was coming, the baby’s nickname initially was even “cinco”.  And then to my utter amazement at the ultrasound the tech told me I was having a girl…I think I always knew I would have one, but I don’t know if I would have kept going and going just to get one, and I honestly didn’t let myself believe it till she came into this world February 24th, 2011.

That morning I was scheduled for a 7:30 induction because they wanted her to be born at Vanderbilt so they could take her to the Children’s hospital as soon as possible after birth due to her congenital heart defect.

We had left the house late and I was both nervous and frustrated and was very emotional with the boys and my husband.  Finally we made it to the hospital a little before 7:30 and I said goodbye to everyone and my husband then took them all to school.  Our youngest boy stayed with his aunt at home.

Even walking into the hospital I was feeling pains, but all that 9th month I had been feeling pains so I wasn’t really thinking about it too much.  Then after I got hooked up to machines, my nurse Athena, who was an awesome nurse at Vanderbilt Labor and Delivery, told me “you feel those, you are already contracting…being your 5th, we’ll probably only have to give you a little push with pitocin and you’ll have this baby in no time”  She asked me how my other labors went.  I told her about 6 hrs or so and I was done with my other inductions.

I had warned them about my sometimes hard veins and after one failed attempt on one arm, they finally got my IV in on the left arm.

I was 3 cm when they first checked me.  After an hour or so they checked me and I was 3-4 and more thinned out.  I was already progressing on my own and they decided to start my pitocin to get my contractions in a more regular pattern.

They also gave me my first dose of penicillin due to my being positive for Group B strep, a bacterial infection that mom can pass onto baby at birth and can cause complications to the baby.  They wanted me to get two doses of the antibiotics in before I delivered so they weren’t rushing breaking my water.

After slowly increasing the pitocin every so often, my contractions soon got to be more regular.  And although initially I was texting and updating on facebook…they were soon getting to be harder to get through.  The nurse had me checked again and I was 4-5.   Oh and did I mention that the doctor decided that while she was checking me to kindof detach the bag around the opening of the cervix to stimulate more dialation and stronger contractions…it was one of the most painful checking of my cervix’s that I have ever gone thru!

I was progressing good, but they wanted my contractions to start coming more regularly between every two minutes.

The doctor said for me to get my 2nd dose of pitocin at 12:30 and then she would come by an hour later to break my water.  She figured that since I went to complete rather quickly towards the end with my other labors that I should go fast after that.  I was anticipating maybe delivering by 2.  But she didn’t come till close to 2 to break my water and check me again.  At that time I was a solid 5 and the baby’s head had moved down a little.

I braced for the pain as she broke my bag of water, which ended up being stubborn by the way and didn’t want to break at first.  And I also knew that my contractions were about to get alot more intense!

And boy did they ever!  They started coming strong and hard…the ones that I had to chant to get through and rock on the rocking chair I requested.

It was getting close to the boys getting out of school at that time, but I knew I needed my husband so we told his sister to go pick them up.

As that hour went by the contractions got really intense and I was having a hard time dealing with them.  I usually do it natural the whole way and just know that if they are getting this way that I probably am getting near the end.  But this time I had gone into this nervous and was having 2nd thoughts.  I told my husband I was thinking of getting an epidural so i could get some rest, he told me to do it I wanted to.

We called the nurse and I asked her how long it would take to put in and how long it would take to take effect.  She said 10 mins to put in and 20 mins give or take to start working.  I had been so drained the days leading up to this birth that I decided to go ahead with it.  She told me that anesthesia was next door and would be in my room next.

In the time I waited the contractions were getting so hard that I was now starting to close my eyes, hold my husbands hand tightly, and chant the dhikr that always gets me thru my labors, just focusing on one contraction at a time to be able to deal with the pain.

The nurse came in and told me to get on the bed.  And I had to handle those contractions in the bed.  I hate handling contractions in a bed.  Movement of any kind, in a chair, walking, whatever, helps to get a person thru the pain…

The anesthesiologist came in and worked in between contractions to get me ready.  After  some really strong and intense contractions that were starting to hurt me even more inside with real force and were coming right on top of another, the epidural was put in.

I was then put on my left side and told to stay that way as it took effect.  These were probably the most painful of all my contractions.  And although they were suppose to get less and less painful as the epidural took, I was still feeling everything and my legs had only started to slightly feel tingly.

The nurse asked me if I was feeling pressure or not, and I really wasn’t but I was feeling the contractions with more force and it almost was like I knew the head was moving down.  Since I was in so much pain and she knew from history that I sometimes changed very quickly she decided to check me.  I was 8-9 cm in that contraction.  With the next contraction I was feeling the pain even more but my legs were beginning to feel heavy and numb and she checked me again and I was 10.

“Time to push, do you feel like pushing?” she said.  “I can push?” I said…you don’t have to ask me twice, I knew that if I got to push that even if I felt the rest of the contractions still that I would be working with my body and I was ready to do whatever I had to get the baby out and stop my pain!

“I want to push” I said.  “Wait!”, the nurse tells me.  “We need to get the NICU team in here and everyone needs to setup”…I was like hurry, please hurry.

Finally they told me to start pushing.  By this time my legs felt really heavy and it was hard for me to pull them up and also to gauge how much I was pushing or not.  I tried to just visualize pushing in my head and bear down and hope that I was doing something.

I expected to only push a couple times, usually that’s how my last two babies have come out, flying!  But try as I might this baby was taking everything I had to push out.  They said I was pushing but that it wasn’t coming as much as they wanted.  So one of the nurses gives me a towel to pull on as I push.  I do this and start making more progress.

As I am pushing at the end I start coughing and they tell me to breathe, but the funny thing is that when I coughed it helped my pushing.  So they said “cough if that helps!”  And honestly I would get short on breath as I pushed and just coughed accidently but it seemed to help with the pushing.

Finally I started to feel a pressure that I knew she must be close to coming out and I pushed with all I had to get her out.  And so after 20 mins of pushing, they finally set baby Sajda on my chest and she was immediately crying loudly and sounding healthy.  My husband cut her cord and took pics and videos for us.

The NICU team checked her out.  Then because she was breathing good they wrapped her up and let me hold her before they took her away to the children’s hospital.

I knew she had some serious issues that they would need to address in her first few days of life, but in that moment all I could think about was that my princess was finally here!

Me and Sajda moments after her birth at around 3:30 pm on February 24th, 2011

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Sajda’s CHD (Congenital Heart Defect) is known as Pulmonary Atresia with VSD.

Sajda's CHD (Congenital Heart Defect)

Her cardiologist explained to me today that this pic above is almost exactly what her heart is like.

Her pulmonary artery is blocked and no valve was formed…and in the complete repair they will unblock it and may or may not put a valve in…and they will repair the VSD (the big hole between the right and left ventricles).

We will find out in the next day or so whether they will go ahead with the complete repair now or will do what is called a BT Shunt…which acts a temporary fix till they do the complete repair.

With the shunt she would  only be in the hospital like a week total if she is eating well…but with the full repair she would be here significantly longer (like a month).  But with the shunt she would have to come back in 3-6 months for the full repair and it would mean she has to have two hospital stays.

Neither sounds good to me cause all I want to do is hold my baby and take her home.

But I know that the doctors are going to do what’s best for her, I still don’t have to like it though.

 

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In those first few days…Sajda had many very special visitors

Bobu,  Salih and Bilal, older brothers.

Bobu, Salih and Bilal, older brothers.

Salih and Bilal, older brothers and Dadu

Salih and Bilal, older brothers and Dadu

Mu'min, older brother

Mu’min, older brother

Aunt Gullizar

Aunt Gullizar

Bobu wondering how things will go for you in the days to come.

Bobu wondering how things will go for you in the days to come.

Aunt Ajiza and Bobu

Aunt Ajiza and Bobu

Jiyan and Najia

Jiyan and Najia

Uncle Daniel

Uncle Daniel

Aunt Jemila

Aunt Jemila

Uncle Daniel

Uncle Daniel

Aunt Jemila and Dadu

Aunt Jemila and Dadu

Aunt Ajiza

Aunt Ajiza

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Labor and Laughter go hand in hand for us.

We pretty much pass the time joking around till it gets to the “must only concentrate on this” part of labor.

The last two births, both times our nurses told us pretty much the same thing…”you guys are a fun couple, can you guys come back again?”

Turns out that a lot of people are rude and nasty with the nurses, and laughs, well those are hard to find.

Here are some funny moments from Sajda’s birth….hope you will take a moment and smile with us:

-Breathe, Nirgaz, Breathe

When the contractions were getting stronger, I was chanting more and more, and the nurses would remind me to breathe, but I just kept doing what I was doing and kindof ignored them because I needed to do it my way to deal with the pain.  So one of the times Meran chimes in and says “Breathe”…ok, man who made me pregnant and now is telling me how to labor…maybe not such a good time to tell me what to do since I am in pain with our baby and you don’ t have to experience the pain like I do…(really though he was looking out for me and copying what the nurses had said before to me)  So anyways I finish that contraction and then I give him a good stare and blurt out “If I faint, then tell me to breathe, otherwise I am doing good”…At this point both the nurse and Meran burst out laughing, as do I.

-My name is Eva, and I am not a Terrorist

A few weeks prior to having the baby, Meran and I one late night watched the movie “My name is Khan”.  In this film he’s on a mission to go tell the President that his name is Khan and he is not a terrorist.    So during labor one of my ways of dealing with the pain is to chant Dhikr (Arabic phrases of remembrance of God)….so I would say “Allah Akbar” for example and as the contraction intensified, usually so did my volume.  So at one point Meran jokes, “They are going to think you are a terrorist”…so I smile at the end of the contraction and say “Hello, my name is Eva, and I am not a Terrorist”  You had to be there, but it was funny!

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