Our Day At Children's and St. Paul

Our visit to Children's Medical Center and St. Paul University Hospital on Wednesday was a long, jam packed day.  Grace and I decided to do one blog update about the day, covering it from each perspective.

Grace:  Dave and I have been waiting for this day it seems like forever.  Ever since we received our child's diagnosis, we couldn't wait to visit the two hospitals where we thought we wanted Brent to be delivered and have his open heart surgeries.  First, we thought about choosing surgeons.  Dr. Joseph Forbess was featured as one of the best up and coming heart surgeon doctors in the book my husband was reading, Walk on Water:  The Miracle of Saving Children's Lives, and he now practices at the Children's Medical Center of Dallas (CMC).  Next, just in case my baby must have surgery immediately, we decided that we wanted me to deliver the baby at a hospital near the CMC.  I would hate the thought of being far away in a hospital recovering while my newborn was miles and miles away being worked on.  So, although I had carefully chosen my OB before we knew of Brent's diagnosis and had planned to deliver at The Medical Center of Plano, we chose to look at UT Southwestern Medical Center (formerly St. Paul University Hospital), which was only a block away from CMC.  There was another hospital right next to CMC, but another pro to choosing St. Paul/UT Southwestern was that it had a level 3 NICU, which our delicate baby might need.

Our first stop was at Children's Medical Center of Dallas where I was scheduled to have an hour and a half long echocardiogram where they looked at Brent's heart from various views and attempted to identify the parts of the heart and abnormalities.  The staff was nice and I kept hearing from the two sonogram technicians and the two cardiologists, Dr. Catherine Ikemba and Dr. Matthew Lemler, who reviewed the ECHO, "That's beautiful.  Brent takes beautiful pictures," with smiles and nods of affirmation.  They must not get too many good echocardiograms for them to be saying that.  But even with the good pictures, the diagnosis would still not be 100% complete.  Apparently, even with the best echocardiograms, doctors are not entirely sure until they actually go in.  The consultation between us and the cardiologists seemed surreal.  Because we had researched as much as we could before this meeting, we weren't shocked by any information we were hearing.  So, some things had changed, which Dave will provide in detail below.  After hearing from other parents, I had a few questions of my own that dealt with preparing for Brent's arrival:


One of the questions I had for the cardiologists was, "Because heart babies are more susceptible when exposed to respiratory viruses that lead to infection of the lung and breathing passages between birth and the 4-6 month surgery, should we keep our toddler home from places that are breeding grounds for colds?"  (Our toddler Bryce was constantly sick last year, and I had thought I would keep him home from church and Mother's Day Out because he might spread the virus to me, and I might spread it to the baby). His reply was that he would try to keep life as normal as possible since our lives would already be turned upside down from Brent's condition.  So, that is something Dave and I will consider. 

Another question I had was regarding an oxygen tank.  We had read that some babies and toddlers had to be on oxygen if their levels were too low.  I had planned on getting a lightweight stroller frame (around 15 lbs.) where the infant seat can attach to the stroller since our other stroller was bulky and heavy to get in and out of the car.  The doctor's reply to the question of whether or not the baby will be sent home with an oxygen tank was, "Possibly."  So, because there is a possibility, it looks like we will go with the heavy-duty infant carrier/stroller like this one.

At the meeting we also learned that we will probably participate in the "Safe at Home" program.  Basically, the time between the first and second surgeries, the blood flow between the the body and lungs is "delicately balanced".  Changes may mean that the baby is experiencing heart problems and will need immediate attention (or surgery earlier), so we will need weekly visits from a nurse practitioner to check up on us, which I know I will appreciate.  I remember when my first baby was born, I was actually really scared to bring him home because I wasn't sure if I would do everything right (he was born 2 months early).  And I think I'll feel the same way having a special needs child.  I want to do right by him!  We'll be sent home with a scale (to monitor the baby's weight) and a pulse oximeter (to monitor oxygen saturation levels) and be followed closely by the pediatric cardiologist.


So, we approached this meeting determined to attack our situation head on, wanting to be ready and plan for the future, but in the back of our minds we understood the gravity of Brent's diagnosis.  At any moment, something could go wrong, and we were resolved to plan for the worst and hope for the best. 

David:   One of the specific prayer items we have asked people to pray for since the beginning is the growth and development of Brent's aorta.  This is one of things they were especially looking at during the echocardiogram on Wednesday.  Unfortunately, we got mixed news on this front.  Some of the images they took of Brent's heart indicate he has coarctation of the aorta, while other images seem to suggest he does not.  This brief YouTube video does a good job of describing what a coarctation is.

Whether or not Brent has this coarctation makes a significant difference in what the first few days and months of his life will look like.  As the cardiologist stated at the office "It's a game changer".  In essence, it will likely mean the difference in him needing open heart surgery within the first few days of being born versus his first surgery being the Glenn at 4-6 months of age.  Having his first open heart surgery at 4-6 months may not sound like much difference, but it gives babies time to get bigger and learn some developmental milestones such as eating.  Also, the first surgery is just a riskier and more complicated surgery in general, so please continue to pray for the development of his aorta so that we can avoid this first surgery!

We also learned that Brent has tricuspid valve straddling and atrial septal defect (ASD).  I'm not sure what this means at this point, but it doesn't sound like it is going to change the course of the open heart surgeries he is going to have.  So, unless it changes any further, his current diagnosis is:

• Double inlet, left ventricle
• Ventricular septal defect
• Atrial septal defect
• Transposition of the great arteries
• Tricuspid valve straddling
• Possible:  coarctation of the aorta

Any one of these by itself could be cause for heart surgery.  For example, I have a coworker whose daughter had to have open heart surgery to fix a ventricular septal defect.  When I think about the complexity of my son's heart and the surgeries he will face, it's overwhelming to contemplate.  We did receive a lot of comfort and confidence though from our visit.  Although we haven't met the surgeon yet (that visit is being scheduled), we met several members of the Children's team who will be helping us, toured the facility, and we got to meet Grace's new OBGYN who will be doing her delivery.  Everything was top notched - you can definitely tell why the hospital is ranked so highly.  We have no doubt Brent will be in excellent hands, and are eagerly anticipating our visit with the man who will be hopefully saving his precious life - Dr. Joseph Forbess.  Everything we are able to research about this doctor indicates he is one of the top in his field, and we are looking forward to hearing from him about his thoughts on Brent's surgeries and prognosis.

Please continue to keep Brent in your prayers.  We covet them and will need them in the days, weeks, and months ahead!

Dave and Grace

My Desire

Yesterday, Dave and I took Bryce with us to attend a birthday party/blood drive at a church in Dallas.  We were really excited because we were going to personally meet two heart parents that Dave had met online from one of the support groups we are in.  There was face-painting; my three year old son Bryce liked the Batman symbol on one child's face, so we got in line.  But when it was his turn, Bryce decided that he didn't want to have his face painted (I'm starting to notice a trend of us waiting in line, getting to the front, just to have Bryce change his mind).  They also had a man making characters and animals out of balloons; this time Bryce waited and was rewarded with an Incredible Hulk balloon man.  And they had all kinds of entertainment.  The occasion was to celebrate the one year birthday and accomplishments of Miriam's one year old son, John, who was born with Hypoplastic Left Heart Syndrome.  He already had two open-heart surgeries, and there were pictures with answers to prayers written on them.  Dave also donated blood while we were there.  This is a very good idea and a way for heart families to give back to the community.

Donate blood!

We were connected to Miriam by Deborah, another heart mom with a baby who has the same diagnosis, DILV, as Brent.  These babies are proof that they can make it through open heart surgery.  Dave and I listened with earnest as the moms told part of their stories-the diagnosis, treatments, looking for doctors and hospital- and it really gave us encouragement and warmed our hearts to meet them.  Midway through talking with Miriam, though, I started getting teary-eyed; I didn't figure I was going to get emotional at this meeting.  I'm normally not an emotional person outside the home; I can put on a brave face in public whether I am in pain or worried about a matter.  I feel like I am bothering acquaintances with my problems if I wear my heart on my sleeve and share my worries, which is why I can be quite stoic at times.  I can also compartmentalize, but there would be no compartmentalizing here.  The realization that to get to this part of happiness where there could finally be some kind of normalcy by making babies suffer through these complex surgeries that were necessary to save their lives hit me like a ton of bricks.  This will be our family soon - going through anxious times wondering if the baby will make it through the surgery without afterwards experiencing complications such as strokes or arrhythmia that could lead to cardiac arrest and death.  The time is getting closer, and my desire is that the outcome will be like these two families.

Slowly these things began to process.  This would soon be our reality.  Dave loves to show me things he has found on the internet, and the other day he showed me the "Beads of Courage" program.  It gives children "...the chance to collect a different bead for each procedure or event while visiting the hospital for treatment. The goal of the program is to make a necklace with colorful beads that represent the unique and special journey of a particular child and to make something that they are proud of and want to share with family and friends."  It's a wonderful idea, and we definitely will be participating.  It's something that will remind us and Brent of his journey.


Dave had found this program from another blog that we peruse through:  "Living Whole Heartedly with Half a Heart" which follows another DILV boy born in April 2013.  I read the blog post about the  beads and then looked at the previous post on "How to change on NG tube for a 15 month old".  Again, it hit me like a freight train.  This was important information and it is something that we as parents may have to do to Brent.  After surgery, it is difficult for heart children to eat; their little bodies get tired quickly-their hearts have to adjust to the heart being mended, blood rerouted, so they are tube fed.  But the tube must be put down their nose and into the stomach, and little toddlers are very aware of what is going around them, and they are aware of what their parents are doing.  Attached with the instructions was a warning:  "...these are not graphic, but Jake is unhappy in them, if you don't want to see it, skip over the picture portion of this post."  I don't think I can handle looking at a child who is that unhappy.  I started bawling and told Dave that I didn't think I could handle doing this to our son.  Dave told me we would do what we had to; I agreed that we would have to, but what I really hope is that when the time comes, I can compartmentalize at that time, take away the emotions, and just think of it as a procedure we need to get through under 5 minutes.  I don't want my child to see me cry because I think it would distress him further.  I want to get it over quickly and love on him.  I don't desire this for my child.  This is one of the parts of being a heart mom that I dread, but I know we have to go through it to come out on the other side breathing a sigh of relief, like these other families.

Many of my friends know that I am into Christian apologetics - the discipline of becoming knowledgeable of the Christian faith so that we could "...be prepared to give an answer to everyone who asks you to give the reason for the hope that is in you..." (1 Peter 3:15).  These situations made me think of my desires - I desire for all children to live life happily and not have to suffer because of their broken bodies.  My desire is that no parent should have to see their child go through the pain of all the procedures done just so that their child can live.  I desire a world free from pain and sorrow and evil.  Many skeptics would look at all the pain and suffering in the world and say that there is something wrong with God; God could not be a good God for creating a world like this.  But I see all the heartache and know that it corresponds with what the Bible teaches - we live in a fallen world with corruptible bodies, but this world shall pass and there will be a new heaven and earth where our bodies will not fail us and there will be no night or pain or sorrow.  I see this as evidence that there is something that transcends us all, and so I find the argument from desire particularly convincing.  C.S. Lewis says it best:  “If I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world.”  I desire that world for me, my family, and for everybody.

Grace

All Of Me

People tell me all the time "Stay off the internet, it's only going to scare you."  A lot of times they are right.  But, many times it's also a great source of information, support, and comfort.  Tonight was one of those nights.

Tonight I stumbled across the story of Matt Hammitt, lead singer of the Christian group Sanctus Real.  Matt and his wife Sarah gave birth to a baby boy in 2010 with Hypoplastic Left Heart Syndrome - a condition very similar to Brent's.  Both Brent and Bowen only have half a heart, but Brent has he left half whereas Bowen has the right half.  The open heart surgeries used to treat their conditions are virtually identical.  You can read more about The Hammitt family journey at their blog here.

Being the gifted singer that he is, Matt wrote a song dedicated to his son for one of his albums, and I just heard it tonight for the first time.  It's perfectly wraps up all of the fear and uncertainty that comes with a serious heart defect and their long-term prognosis being uncertain.  But in the song he talks about how he's going to give his son "All of Me", that he's worth all the tears, and worth all the fears. It brought tears to my wife and I.  Somebody who was in the exact same position we were not too long ago, captured the emotions so beautifully.  I'm so thankful he did.  It's how I want to approach this journey with Brent for as long as we're on it - by spending each day giving him all of me.

David

Counting Our Blessings

I tell people all the time that Brent is going to be my "perspective" child.  Each of my kids have influenced my life in different ways and taught me different things about myself and the way I view life.  I thought I had a balanced perspective on life before, but Brent is already taking it to a whole new level - and that is such a good thing.  For sure the weight of his diagnosis and the uncertainty of the future that lies ahead still hits me like a ton of bricks in unsuspecting moments - often at night when my mind has nothing to do but run wild in those moments between wake and asleep.  But, as the shock of the initial news has worn off and the clarity of mind and purpose has returned, it has also become easier to recognize the many blessings that we have.  Some of the many blessings that I am thankful for include:

• Brent.  I remember telling some of coworkers shortly after having Bryce that I was thinking about #4 already.  It took us a few years and a few conversations about timing, but the truth of the matter is, I always knew I wanted #4.  I imagined what he or she would look like, Bryce would be a big brother to them, how they would be the perfect completion to our family.  Brent is the fulfillment of that dream, that wish, that longing of the past few years.  No matter the road ahead, every day of it with him will be a blessing.  I hope he reads this one day and knows and believes that for himself as well.
• Quality Healthcare.  I have moved around a few times with my job, but long story short, we recently moved to Dallas, TX in 2013.  This puts us within 45 minutes from our house of one of the top 20 children's pediatric heart hospitals in the country.  In fact, Houston is number 2 in the country, and just a few hours south of us.  And another of the top 50 is just about an hour away in Ft. Worth.  Bottom line, we have options where we live and if we are ever not comfortable with our care in Dallas, we can take him a few hours south to Houston to the 2nd ranked children's heart hospital in the country.  In addition, we will be delivering at St. Paul which has a level 3 NICU which specializes in infants with serious medical problems and is right next to the hospital where Brent will have his surgeries.  We are touring both hospitals on July 16th and will make our final decisions around that time, but for now, we feel really good about his treatment options here in Dallas.
• Insurance.  Although my insurance has high family and annual out of pocket expenses, which I know I will be paying for the foreseeable future, I am still very thankful for it.  I can pretty much take Brent wherever I want.  It's not an HMO, so I don't have to jump through hoops to get referrals, coordinate care, worry about denials, etc.  So far, all I have had to deal with is deductibles and co-pays.  But, as long as I can take my son wherever he needs, I'll deal with that.
• My Family.  My family has been very supportive during this time.  My sister took the initiative, without me asking, to set up a gofundme page to help with Brent's medical expenses.  You can click on the link and contribute if you like.  It's all voluntary and can be completely anonymous.
• Support Groups.  We have joined a few online support groups for congenital heart defect families.  The other day, we were looking into storing Brent's umbilical cord blood and tissue in the hope that stem cell therapy might one day be able to help or cure his defect.  The initial cost of this was going to be over $4,000 with annual storage fees of $260.  Before signing up, we asked one of our support groups, and they knew about a program for kids with heart defects and other serious conditions where the initial costs are waived and you get the first 5 years of storage for free.  We called to see if we qualified, and we did!  We get our initial costs waived and free storage for the first 5 years.  If we don't use the cord blood and tissue by that time, we can donate or pay the $260 a year to continue storing.  But, we would have never known about it without our online support group.
• Having Time to Plan.  I'm grateful we learned about Brent's diagnosis in advance.  Many parents of CHD kids don't.  They learn about it after the baby is born, all the while expecting to deliver a completely healthy baby.  They have to deal with the shock of very frightening, often life and death news, all while making significant medical decisions all within the same moments, hours, or days.  As hard as this time is, at least we have this time to prepare as best we can for Brent's arrival.
• Faith & Hope.  I don't know if faith has given me hope, or hope has given me faith.  Either way, I believe that although we have some very hard days ahead of us, our best days are ahead of us too.  I have faith that is true, but I also hope that is true.  I have to believe it, and I hold onto that faith and hope.  It's what sustains me through the moments of anxiety and fear.

Many more blessings too count.  I'll count those another time :)

David

Getting By With A Little Help From Our Family & Friends

Father's Day 2014

The out pouring of prayers, support, well wishes, and positive thoughts since Brent's diagnosis has been very touching over the past few weeks - and honestly, very much needed.  Today, one of my coworkers brought me a prayer shawl that some women from her church had made for my wife, and let me know that her church was praying for my family and for Brent.  That really meant a lot, and brought tears to my wife's eyes when I gave it to her.

Prayer Shawl from Dianna

Over the past few weeks, I've been asked a lot "how are you doing?" or "how are you and your wife doing?", and that has become such a difficult question to answer lately.  Brent's diagnosis has been heavy information to process through, and when and how it hits you varies from moment to moment, and day to day.  But I do know this, it would be a lot more difficult to handle if it weren't for the love and support of family and friends.

My wife recently posted about some support groups and congenital heart defect (CHD) communities we are joining and beginning to interact with.  Congenital heart defects occur in 1% of babies born, but we are learning that the community of families and supporters is engaged, well informed, and very helpful.  I know that we will be meeting some of our closest friends as a result of Brent's diagnosis and treatment.

Some of our family and friends have asked through Facebook or asked me directly how they can help out with Brent's medical bills.  I want to first say that I don't want anyone to ever feel obligated to donate financially.  At times, I know some of my family members will be coordinating fundraisers for Brent which I will share through Facebook and on this site.  I've also added a "Donate" button on this site for anyone who wishes to help in that way.  We have insurance, but in addition to our deductibles and coinsurance, there will be a number of expenses that insurance does not cover.  We meet with the hospital in July to find out more.  The fundraisers will cover some of those costs.  Bottom line - only give if you want to.  But please, please, please continue to pray for Brent!

Finally, I leave you with this song.  It's one of my favorites, and basically it's been the answer lately to the question "How are you doing?", at least for me...  I'm getting by with a little help from my friends!

David

Support Groups and Other Stuff

It's me, Grace, again.  Because Double Inlet Left Ventricle (DILV) is very rare, Dave and I wanted to find people who have experienced or who have children with congenital heart defects (CHD).  Mended Little Hearts of Dallas was recommended to me by my friend Susanna as a place to find support, so it's good to know that there are functions we can attend to connect in person with parents of children with CHD; but I still had not connected with anyone with our child's particular heart anomaly.  I had started reading Fox News reporter Bret Baier's book, _Special Heart: A Journey of Faith, Hope, Courage, and Love_.  It could not have come at a more timely moment.  A few days after we received the diagnosis, someone posted about it on my Facebook wall.  It is a story about Bret's life, and I enjoyed reading about how he got a start in his career, his courtship with his now wife (the laundry story I found particularly amusing), but I couldn't wait to get to the chapter where I would find out more about his son's heart defect.  It was particularly devastating for Bret and his wife because they found out only after their child was delivered that their son, Paulie, had a heart anomaly.  I can't imagine delivering a baby and thinking everything is okay just to have a doctor tell me that my child would need open heart surgery to save his life.  We have the luxury of knowing ahead of time, thanks to a competent sonogram technician at the Plano Women's Healthcare at the Medical Center of Plano, and my obstretician, Dr. Heather Bellanger-Licker, who noticed something was wrong with our baby Brent's heart, so we have time to prepare ourselves mentally for what may lay ahead.  So, I am thankful for that.

But still, Paulie's heart anomaly was not exactly what our son, Brent, has.  Bret's son has Double Outlet Right Ventricle, and his son's blood was actually pumping in the wrong direction.  That in and of itself is scary to think the blood is flowing the wrong way, but I still wanted to find others whose child shared the same anomaly as our son Brent.  Brent has Double Inlet Left Ventricle, transposition of the great artieries (TGA), and ventricular septal defect (VSD).

Yesterday, David found a closed group on Facebook called "Children With Congenital Heart Defects."  There are more than 3,000 members, and I have already met several parents whose children have DILV!  I know I shouldn't be excited to find other parents whose children have this defect, but as one member said, "It's nice knowing that you're not alone."  There are other people out there that are going through the exact same thing.  Now I appreciate all my doctors - they have a vast knowledge about the diseases, surgeries, and procedures in their fields, and the ones that I have chosen are all board certified (I chose them carefully), but there is just something about listening to someone whose child has gone through this and connecting with them.  When these people tell their stories, I listen attentively because I know that they have experienced the surgeries and all the emotion firsthand.  Doctors are very good at hiding their emotions, although I have felt empathy from some of them already, which is much appreciated.

While in this group, I have learned a very important acronym.  I kept seeing people post about an 'OHS' and that their child has had several.  Wondering if my child would have to have that, I posted, "I'm sorry about my ignorance; I just found out my son had a CHD, DILV, and will have to have several surgeries.  I was wondering if my son will also have an 'OHS'.  Can you all tell me what that stands for?"  Boy, did I feel dumb when they told me it stood for 'open heart surgery'.  Yes, my son will be having at least two of those!


Now the other 'stuff' that is happening to me: spider veins and varicose veins.  I didn't have these with my three other pregnancies (although I developed some spider veins after my third child was born), but boy, does it hurt to feel the rush of blood flood down my right leg when I get up in the morning!  I finally got a prescription from my doctor for compression stockings and they cost a whopping $140.  "Insurance should cover some of that," the doctor said.  So, I'm going to call our insurance up to see how much they cover.  Meanwhile, my loving husband told me, after I had lamented to him about swimming with unsightly veins (I remedied that by purchasing surf capris, but ended up getting a weird-looking farmer's tan!), "Babe, we are getting older and our bodies are going to wear down.  But we will always love each other."  That is commitment, and I would rather have this kind of love than a fleeting, lustful love that only stays with good looks.  And this is why I love this man!  Dave is my rock, my constant companion, my lover, my researcher, my best support after leaning on God.  I am so thankful that Dave is the one going through this journey with me.

 

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By the way, ladies, if you are suffering from unsightly veins and would like to cover up when swimming, I purchased these surf capris here http://www.paddlesurfwarehouse.com/Roxy-Up-Wind-Neoprene-Capri-Pants-p/roxyupwindcapri.htm

Understanding Double Inlet Left Ventricle (DILV)

Double Inlet Left Ventricle Example

One of the difficult things to do since receiving Brent's diagnosis is explaining his condition in a way that people can grasp and make sense of.  We even continue to learn more about the condition ourselves, and are by no means doctors or experts.  Because there are at least 18 types of congenital heart defects, the mistake people often make is relating it to one they have heard about.  One of my prior posts contains a YouTube video explaining Double Inlet Left Ventricle (DILV) more from a medical perspective.  Once you have had a cardiologist walk you through your baby's defect, the video is very easy to follow.  Since our family and friends have not had that, this post is my attempt to try to explain the condition hopefully in a way that is easier for you to understand.

DILV is very, very rare.  It is one of the types of "single ventricle defects".  These are rare disorders affecting one lower chamber of the heart.  Overall, congenital heart defects occur in about 9 of ever 1,000 births.  DILV on the other hand occurs in 5-10 of every 100,000 live births.  So, if I'm doing my math right, using recent birth rates of about 3.9 million per year, that means around 39,000 babies will be born each year with some type of congenital heart defect, while only 200-400 of those babies will be born with DILV.

DILV currently cannot be "fixed".  When I explain to people that Brent will undergo multiple open heart surgeries along with, likely other heart surgeries, I often get the reply "Well, at least it's something they can fix".  I understand the sentiment the person is trying to convey, but DILV currently cannot be "fixed" - at least with today's medical technology.  The surgeries Brent will undergo are designed to offer what they call "palliative care".  The surgeries will help treat and relieve some of the symptoms of his condition, but they will not "fix" the underlying defect.

With these things in mind, I will try to explain his condition as best I can and to the degree I understand it currently.  The picture below is the best I have found that diagrams a normal heart versus a heart with DILV - the heart on the left is your heart if you have no defects.  The heart on the right is Brent's heart.  I will bullet point a few of the differences that are important to distinguish:

• First, notice that a normal heart has a "right" and "left" ventricle.  The right ventricle pumps your blue blood.  Brent did not develop this ventricle - well at least it is very small and what they call "hypoplastic".  It is not capable of performing it's intended function.
• Second, notice that a normal heart has a division between the right and left ventricle.  This keeps blue and red blood from mixing together in the heart.  Brent does not have this division.  This is what is called a "ventricular septal defect".  Some people have this defect without having DILV and, but itself, it is common and something that doctors can fix.  Brent has it in conjunction with his DILV and his blue and red blood will mix together.
• Third, notice in a normal heart that the pulmonary artery laps over the aorta.  In the DILV heart, positions of the great vessels are reversed.  This is called "transposition of the great arteries", and again, it is a defect that can occur by itself, absent of DILV, but in Brent's case, he has it in conjunction with his DILV.
• Last, notice in a normal heart the left ventricle is on the right side if you are facing the image and the right ventricle on the left side (they are actually on the right and left side of the actual body).  In DILV hearts, the ventricles are switched - Brent's left ventricle is actually on the right side of his body. 

This is all complicated and a little technical, but it's necessary to understand the following main points:

• Barring a complete miracle, Brent will only ever have 1 ventricle in his heart.  I've read people with this condition often describe it as having "half a heart".  Basically, this is a simplistic and easy way of helping people understand it.  He does not have 1 of the ventricles needed to pump the blue blood throughout his veins.  The surgeries he will have are designed to address that.
• The series of surgeries Brent will have will allow his blue blood to completely bypass his heart and drain/flow to his lungs directly.  Until then, his blue and red blood will mix together in his heart.  Some of the complications his heart condition could create for him are: blue skin, failure to gain weight normally, trouble breathing, swollen legs or abdomen, pale skin, poor feeding, sweating, fast heartbeat, heart murmur, fluid buildup around the lungs, heart failure.
• The surgeries invented to treat this came about in the late 70s, early 80s.  As a result, a lot is still unknown/uncertain regarding things like life expectancy, survival rates, complications, etc.  See my wife's recent post here.

I hope this helps our family and friends understand the condition a little better - and anyone stumbling across the blog for that matter.  We feel very good about the care Brent will be receiving, and have some good news to share on that front in my next post.  Until then, we appreciate all the prayers and well wishes that are being sent our way!  Keep them coming :)

David

Feelings

Hi, this is Grace.  When Brent was first diagnosed with a heart defect, Dave had already been reading up on the possibilities of what the diagnosis and prognosis could be (based upon the description provided by the perinatologist-we didnt' have a name for the anomaly until we met the cardiologist, so we thought it could be Hypoplastic Left/Right Heart Syndrome).  So Dave knew more about what it would be like for Brent to live life with this defect.  Since I'm more of a visual person, I knew Brent's defect would not hit me hard until I actually saw some of what he would go through.  And that day was yesterday and today.

Dave wanted to prepare us for what may lie ahead for Brent.  Depending on how Brent's pulmonary artery and aorta are growing, there is a possibility that Brent would need open heart surgery within the first ten days of life.  He showed me this video of a baby who has DILV, like Brent, and who has already had some of the same open heart surgeries Brent will be having.  **Just a word of caution: it is graphic since it shows the baby's chest open.  The doctors have to leave it open to monitor the swelling, so do not watch the video if you think it would be too graphic for you.**  This video made me cry just seeing what that precious baby had to go through and what may be in store for ours.  This was the first time I cried since learning of Brent's diagnosis.  Dave had already seen it all and was already emotional about Brent's whole condition.

So, I have my ups and downs.  I remember taking my three year old with me for the first time to my chiropractor visit because Bryce makes me smile with all the cute things he does and says, plus he takes my mind off things.  So, the day after the cardiologist visit was a good day for me.  Today I was thinking about life spans, and I started Googling 'DILV mortality rates/life expectancy', and started crying again after reading that the mortality rate for people diagnosed with DILV is high.  I need to re-read the articles I found because I'm not sure if that's children who have had the last surgery (I think it's called the Fontan), but I did read that doctors are unsure of the life span of children with the operations because these operations were just invented 30-40 years ago.  Indeed, that was what our pediatric cardiologist Dr. Dyers, told us.  I was also reading some blogs and the comments under the blogs, and there was a comment from a woman whose child had DILV and I think had the surgeries, but did not make it past age 26.  I know that everything is in God's hands, but I still can't help but feel sad that our little guy may not live long and that we might outlive him.  But like I keep saying, we will love Brent for however long God lends him to us.

Then I saw this comment from the No Hands But Ours web site:

Kyle says:

April 4, 2014 at 12:41 am

I literally stumbled upon this website tonight while doing a little research and as I read I just wanted to give the parents (especially those with children with single ventricle hearts) a word of encouragement. I am believed to be the oldest surviving single ventricle patient right now, I am told I was the 4th person to have the original Fontan surgery (I have also had a Glenn) In 3 months I will be 45 yrs old and when I asked my Cardiology team several weeks ago at a annual check up “what is my life expectancy?” They just all kind of looked around until one of them laughingly said we don’t have any idea, we have no reason to think you are not going to be around for a while.

I assure you children today who are single ventricle can have a normal life expectancy, they may have some bumps in the road but modern medicine has made incredible strides in the last 40 years and it will continue to do so as your child gets older. That said I know I am unique and blessed in the fact that I have survived as long as I have, the truth is the Lord has had his hand on me my entire life, and without my faith and trust in him I would not be alive today. If there is one bit of advice I could give a parent of a child with a heart problem (or any child for that matter) it would be to encourage your child’s faith in the Lord, as well as your own. (Make no mistake, I assure you Jesus Christ is very real, I know that may not be a popular viewpoint today but it is the truth)

Also and this may be difficult for some parents who have a child with special needs, but it is very important for their development, treat them as if they were just as normal as any other kid. Trust me they know their limits, they do not need anyone to remind them. And finally be there for them, I know there is no doubt that I would not be around today if I would not have had loving parents. There were times when I knew my parents could not do anything to help my situation, except be there, but they were there, and that is the best thing you can ever do for your child too.

I didn’t mean for this to turn into an essay but I would be happy to answer any questions a parent may have about what they and their child can expect if they are single ventricle. My email is kylehosner at yahoo .com I look forward to hearing from you.

Thanks

Kyle

This was from one of the first ones to have the procedure done, and he is still alive!  Even though it is not guaranteed that Brent will have a long life, hearing stories like this gives me hope and I felt so encouraged.  I am reminded of Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."  I know this Bible verse was written to the children of Israel, but I pray that God also has plans on this earth for our little one.

Brent Ethan Dunlap, 24 weeks 5 days gestational age

Double Inlet Left Ventricle - YouTube Video

This short YouTube video does a good job for the most part of describing Brent's condition.  I will do some follow up posts later about the surgeries that will be used to attempt to correct it so you have an idea of what's in store for him.  On the one hand, it's very scary.  On the other hand, it's amazing what modern medicine is capable of.

Diagnosis

Double inlet left ventricle

As expected, today's cardiologist visit gave us many of the answers we have been waiting for, while at the same time confirming for us that the future for Brent and our family will look very different than what we could have envisioned.

The official diagnosis for Brent's heart defect is "Double inlet left ventricle" and it is very, very rare.  It only occurs in 5-10 out of every 100,000 live births.  Below is a brief technical explanation of the condition.

In the normal heart, the right and left lower chambers (ventricles) receive blood from the right and left upper chambers (atria). Oxygen-poor blood returning from the body flows to the right atrium and right ventricle. The right ventricle then pumps blood to the pulmonary artery, which carries blood to the lungs to pick up oxygen.  The blood, now oxygen rich, returns to the left atrium and left ventricle. The aorta then carries oxygen-rich blood to the rest of the body from the left ventricle.  However, in those with DILV, only the left lower heart chamber is developed, and both upper chambers carry blood into this ventricle. This means that oxygen-rich blood mixes with oxygen-poor blood. The mixture is then pumped into both the body and the lungs.

Brent's version of DILV also has a transposition of the great vessels in which the aorta arises from the small right ventrical, and the pulmonary artery arises from the left ventricle.  (basically the two ventricals are flip flopped).  

Additionally, he has:

• Ventricular septal defect
• His aorta is anterior and leftward
• L looped ventricles

In short, Brent will be faced with at least two, and potentially more open heart surgeries by the time he is 3 years old.  The 1st could come within the first 10 days of him being born.  The 2nd would be around 4-6 months old, and the 3rd would be around 2-4 years of age.

After that, the long term prognosis is unknown.  If the surgeries go well and he doesn't have any other complications, he should be able to live a relatively normal life.  The questions will be how long the heart will hold out, will he need additional heart surgeries in the future, possibly a heart transplant at some point, etc.  And of course, multiple open heart surgeries on infants and toddlers is a very scary prospect for us.  Still, if I had been born with this condition, there wouldn't have been any treatment options.  So, I am extremely grateful to live in a time where medical technology is going to give my son a fighting chance at life.  And of course, we are still praying for healing, guidance as we make decisions on treatment options, hospital selections, and much, much more.

At lunch today, I kept thinking about the odds.  5-10 out of 100,000!!!  I was telling Grace and kept thinking to myself - "how in the world did this happen?"  One day I hope to get a similar question from a curious, handsome little boy.  And when I get that question, I plan on telling him that it means he has a "very, very special heart made only for very special little boys".

David

P.S. - Specific Prayer Requests At This Time:

• Pray Brent's Aorta continues to grow and develop between now and the birth
• Pray that his ventricular septal defect does not narrow anymore
• If these first 2 things happen, he may not need his first open heart surgery until 4-6 months old instead of within the first 10 days.
• Pray for guidance in setting up the right hospitals and surgeons for his care
• Pray for strength and peace for the family and continued health for Grace throughout the remainder of the pregnancy