FAQs

We have gotten a lot of questions (which is great) and we thought that we would post some of the most common questions with answers here so that everyone can be in the know.  If you see a question here you asked, don’t worry!  It means that many other people also wanted to know this.  If you have some other questions for us, please feel free to ask.  Sometime the questions people ask help us to get more information!

                      

Q:  Does the baby’s heart condition have any effect on the pregnancy?

A:  Nope.  I do have to see the high risk obs at U of M because one of them will deliver our baby girl.  But while our baby girl is in the womb she is perfectly safe, growing and developing well.  Since the heart functions differently while you are in the womb (because you are not breathing with your lungs), her heart condition does not do anything to affect her or me.  I do not have any extra restrictions on me, even though husband keeps joking he wants to put me on bed rest.  It is important that she is full term though.  If she comes early, she will have a more difficult start to life.  It is a good thing that the majority of babies in my family are big!

Q:  Do the doctors have any idea why her heart did not develop?

A:  Unfortunately, they have no idea as there is no know cause.  It can really happen to any one.

Q:  Are you more likely to have another baby with a heart condition?

A:  There is an increased risk for us to have another child with a left-sided heart problem.  The chances are estimated to be around 5-9%, which are increased from the general population but not extremely high.

Q:  Is there anything I can do to help?

A:  We appreciate your prayers and support, which helps us more than you know.  Of course, once our baby girl arrives, we will need some extra help, but you can still help now.  Please donate blood and encourage others to do so as well!  You could be helping our little baby girl with your donation!

December 17, 2009

I remember this day like it was yesterday.  It was the day we had our anatomy scan with our older daughter.  I thought of it as a late birthday present and an early Christmas.  My husband and I always agreed that we would find out the gender ahead of time because we are planners and cannot wait the extra 20 weeks!  So I was very excited when the day finally rolled around.

I wore blue because I was convinced that we were having a boy.  I had felt so good throughout my pregnancy like my sister who had just delivered her son while two of my good friends had suffered through harsh bouts of morning sickness while pregnant with their daughters.  Well, it was a good thing a brought my pink sweater with me because we found out that we were having a girl.  I don’t even remember the tech saying everything looked “normal”.  I just took this for granted.  A lot changes in two years and we have learned not to take so much for granted.  Every day is truly a gift to be treasured and we love our growing family!

U of M Visit Update – Part Two

This post is a follow-up to yesterday’s “quick” update about our U of M visit on Thursday.  If you didn’t get a chance to read that post, you might want to read that before reading this post.  This has more of the details that we learned during the day and shows you why yesterday’s post was “quick”.

As we stated yesterday, overall we were very happy with our first visit with everyone at U of M.  The day was totally exhausting even though we weren’t doing anything physically taxing.  It was definitely mentally and emotionally taxing.  But it was worth it and for sure gives us direction and hope.

We learned that ideally our little baby girl will have her first surgery 2-5 days after she is born.  She needs some time for her lungs to develop before they do her first surgery.  She will be fed intravenously before her surgery because if she has food in her digestive system, there can be blood supply issues that cause serious damage.  Of course, we do not want this.  After the surgery she will be fed with a feeding tube with breast milk (hopefully).  Once she can digest the milk and is getting stronger, she will be able to try drinking the milk on her own.  We talked with a few people about giving her a pacifier to develop her sucking muscles because of the care package from Sisters By Heart (thank you!) and everyone was supportive of it.  Glad to hear that.

If everything goes well, our little baby girl will be able to come home 2 weeks after the surgery.  Of course, this is best case scenario and if there are any complications or whatnot, we will be at the hospital longer.  She may still have a feeding tube when she comes home but most babies do not need it long after they get home. 

At first our little baby girl will be in the pediatric cardiology intensive care unit.  She will have her own room and her own nurse assigned to her.  One parent is allowed to stay overnight with her while she is the ICU.  Once she is strong enough, she will be moved to her own room in the general pediatric cardiology unit where both parents can stay in the room with her.  This is a big change for the new hospital because all of the rooms are private at the new hospital and before they were all shared rooms. 

There are also many other lodging arrangements that are available from a hospital at the hospital, to a Ronald McDonald House across the street to numerous hotels in the area.  Obviously, we only live 50 minutes away and have our older daughter who will be at home.  So we are still not sure how we will handle the lodging arrangements.  There is still much to figure out but it is good to know our options.

The second surgery will be when our little baby girl is 4-6 months.  This will put us in late July through September.  It all depends on how she is growing and developing as well as scheduling with the hospital.  For the second surgery she will likely be in the hospital about a week with the typical disclaimer that if anything goes other than as planned it will be longer.  Since my sisters are teachers, we are hoping that our little baby girl will be strong and ready to have her surgery before the school year starts.  But of course, we want to do what is best for her no matter what.

Her third surgery will be when she is around 2 years old.  The hospital stay for this surgery is often under a week.  And the third surgery is the end of the planned surgeries.  She will have to continue to go to her cardiologist every year and with any issues that develop. 

It feels good to have a plan laid out for us.  Although there are so many TBDs, it is still comforting to know what we are looking at and that we are working with a team who has been through it so frequently with high success rates.  Dr. Bove told us another interesting story about a medical student that was finishing his rotation in pediatric cardiology surgery.  He had an oral examination at the end and was asked what the most common congenital heart defect was.  The answer is a VSD (a hole in the wall of the heart) but this guy said HLHS, which is very uncommon other than at U of M.  But people come to U of M from all over the country and world to get treated at U of M and Dr. Bove for HLHS so that student thought it was so common.  Funny story but I hope that guy isn’t working with us in the future!

Another thing we talked with Dr. Bove about is the future for our little baby girl.  Dr. Bove says that he sees no reason why the heart cannot function as it is repaired for at least 30-40 years.  This is hard to think about when you actually put it in practical terms.  This means that she can live until she is 30-40 without having to have any further surgeries.  But after that, it is likely she will need further help.  Dr. Bove said that if medical technology does not progress from today over the next 30-40 years (which, as we all know, is VERY unlikely) that she would have to have a heart transplant at that time.  It is scary but at least there is a plan. 

The good news is that Dr. Bove says there is a lot of promising research going on right now that will advance over the next years and be there to help our little baby girl in the future.  Dr. Bove mentioned that research is working on regenerating the lower part of the heart using parts of the upper heart that are cultivated.  Also, there are implants that are being developed that would be put in an artery to help pump the blood and take some of the pressure off of the right ventricle.  This is all very encouraging and Dr. Bove also says that it is impossible to predict where we are going to be in 30-40 years because just 30 years ago the three stage surgery as they do it today could not have been imagined.  Needless to say we will be doing further research on the research that is developing in this area and I will be keeping an eye on patents in this area as well.

In addition to my regular OB appointments, we will have additional echos (ultrasound on the heart) scheduled.  We have our next echo scheduled at our local hospital so we do not have to go out to U of M.  It will be January 5^th.  We will then go back to U of M for a day full of appointments on February 3^rd.  It will be at that appointment that we will discuss our birth plan in more detail.  Right now it isn’t clear if we will wait for our daughter to decide when she wants to make her appearance into this world or if we will schedule an induction.  We want to do what is best for our little baby girl and that means ensuring she is born right at U of M rather than some other hospital or anywhere else for that matter.  We are about 50 minutes (driving the speed limit) to the hospital.  We are not sure if this would mean they want to schedule an induction or if they would allow us to come in when I have an indication of labor.  We shall see.

If you made it through this post, CONGRATULATIONS!  It is so long!  There is just so much to share!  Thanks for your support.

U of M Visit Update

This is just a quick update on our U of M visit yesterday.  We will get you more details later.  It went really well.  As promised, the new hospital is really nice and huge.  We didn’t get lost on the way to any appointment, which is a good start.

The day had its ups and downs.  We started out with a genetic counseling and another level two ultrasound.  We were reminded that without doing an amnio we cannot rule out genetic defects.  There are not any specific defects that are suspected and everything “is within normal ranges” but there could still be problems since having a heart defect increases changes of genetic defects.  As we all know, there are no guarantees.  This was a down part of the day.

We met with a social worker to discuss the more practical side of our hospital stays and all things “non-medical” as she put it.  Our meeting lasted much longer than I expected and was very helpful.  We got a lot of really good information and will continue to work with her going forward.

Next up was our echo, which is ultrasound of just the heart.  There was a student observing, which actually gave us a lot of information because they were talking about what we were looking at in a lot of detail for the student’s benefit.  We then met with one of the pediatric cardiologists to discuss the outcome.  Of course, it was officially confirmed that she has HLHS.  She does have a left side of the heart but it is just underdeveloped.

During both the ultrasound and the echo our little girl was so active.  We think she is a bit camera shy because she is always moving out of position for whatever we need to look at.  She has had some many ultrasounds already and really does not seem to like them.  But it was fun to see her move and feel her move at the same time.  The OB said she seems very active and happy!

The last appointment of the day was by far the best.  It was with Dr. Bove.  We have heard such great things about him that I was almost worried I had built him up too much in my head.  Well, this was not the case at all.  He was amazing.  He was easy to talk to and very confident without being cocky.  He answered all of our three pages of questions.  My husband even had one that no one had ever asked him before.  I am not sure if this is a good thing or a bad thing. 

We mentioned that we have been in contact with two of his former patients and he knew both of them off the bat.  You could tell how much he cares about his patients.  He shared a really touching story with us about his oldest living patient.  She is 25 now and a few summers ago she came by to visit Dr. Bove.  She had just graduated from undergrad and was going to spend a year doing some post grad studying in Australia.  As he told us how well she was doing and how she didn’t have any other surgeries after her three, I couldn’t help but feel optimistic for our little girl’s future.  This was obviously a high point of the day.

This “quick” update is much longer than I intended but believe it or not, we have many more details about the day to share.  So check back later and we will have some more information. 

Thank you to everyone who passed along texts, voicemails, emails and FB messages of support.  Even if we don’t have a chance to respond quickly to you, we love hearing from you and are very thankful for your support!  Thank you all!

Tomorrow

We are so excited and nervous that tomorrow is our first appointment with the team at U of M.  We have a full day of meetings planned.  We will get another ultrasound and echo and the last meeting of the day is with Dr. Bove, the heart surgeon.  It will be good to see our little girl again and see how she has grown and developed over the past few weeks.  We are especially looking forward to tomorrow because the team at U of M has seen HLHS many times and will be able to give us the plan going forward with more specificity. 

“Met” a Heart Warrior

It gives us great comfort to hear about heart warriors – those children who have survived their open heart surgeries and are doing well.  You never know when you meet one of these warriors but it is always great! Today was one of those days!!

My husband told one of his working colleagues about our baby girl’s heart condition.  The colleague said that he has a friend whose 10 year old son has a heart condition and had to have surgery right after he was born.  So the colleague reached out to the friend without remembering what condition either child has.  That friend’s 10 year old son with HLHS, had his three surgeries at U of M with Dr. Bove and is doing really well!  His email brought tears to my eyes as he told us he wished we didn’t have to meet like this but provided support and encouragement.  His son is doing really well both physically and mentally.  Most people do not even know that he has a heart condition.  He even ran the mile with his gym class recently.  He also had such great things to say about Dr. Bove and everyone at U of M.  We will be in contact with this family more in the near future but I am already truly grateful to have “met” this heart warrior family even if it is just though email!

Sisters By Heart

Our package arrived from Sisters By Heart!  WOW!  These ladies really put a lot into it.  They provide you with tons of information and all of their stories.  With every item, they put a description of why you will need it and all of them had me crying.  It is so nice to know that there are people out there who have been through what you are going through and then on top of it, they give you items that they found necessary.

Thank you to Jenny for letting us know about Sisters By Heart and thank you to all of the ladies who are a part of this great organization!  It says a lot about these ladies how they reach out to perfect strangers to provide support in such a time of need. 

Thanksgiving Weekend Recap

We have much to be thankful and we do realize this.  We had a great holiday weekend with family and friends.  We were able to gather ourselves with our time off and relax.  It was even topped off with a Michigan football win over “Ohio”, which is hopefully a sign of good things to come.

The MDC

So back when we got the news, we were promised a meeting called a multi disciplinary council (MDC) with various doctors and people from our hospital.  Initially, we thought it was going to take place by the end of that first week.  Well, it took until Friday to get the meeting scheduled.  The meeting was not taking place until the afternoon the day before Thanksgiving.

We were not very happy about how long this was going to take.  If we waited until our meeting to take action, it would nearly be December by the time we could even try to schedule our next appointment due to the Thanksgiving holiday.  We knew that we wanted to see Dr. Bove at U of M, so why was it necessary to have this meeting with so many people when he was the one with all the answers?  Well, we took matters into our own hands and called over to U of M.  Shortly thereafter, we had our appointment scheduled at U of M with Dr. Bove – December 8^th. 

There were times that we wanted to cancel the MDC.  It seemed like it would be a waste of time.  After meeting with one of the awesome OBs from my office, whom I hadn’t seen since she delivered my older daughter, we decided to go to the MDC.  My OB was generally very optimistic, which was a change from everything we had been experiencing lately.  She let us know she would also be at the MDC.

The MDC started with a genetic counseling, which we didn’t even really want to have in the first place.  We know there is an increased risk of genetic defects but according to our integrated screen and the level two ultrasound, everything looks normal.  We understand that there are errors associated with both of these and there are no guarantees but we didn’t want to have to listen to the genetic counselor try to convince us to have an amino or mention other alternatives that we have never been willing to consider.  Much to our surprise, the meeting went well all things considered.

There was a break after we met with the genetic counselor and before meeting with the room full doctors.  When we were called back into the meeting room, it was filled.  There were four doctors, two residents, the genetic counselor, my bff who is also a doctor, my husband and of course me.  The social worker, whom I gathered was supposed to be there merely to take notes, could not attend.  The genetic counselor took notes for us, which were very detailed and highly appreciated.

The meeting was a bit intimidating but we were prepared with our research and our list of questions.  We learned a lot and the pediatric cardiologist said she highly recommends Dr. Bove and U of M, so we were already on the right path. 

It felt good to get more information and be moving forward although we could have had a few less people in the meeting to get the message across in a much more effective manner.  But I guess everyone wants to have a say.

Reaching Out

In our research, we were able to find a lot of blogs out there of people who have similar stories.  I found a very inspirational story at: www.alyjeansspecialheart.com/.  It touched me quickly when I read their story of the level two ultrasound.  It sounded so similar to my story and touched me.  They had also decided to go to the U of M and had Dr. Bove for the surgeries.  I made my way through all of the posts, mostly with tears in my eyes, and was so happy to see their family standing strong on the other side of all of this. 

I decided to reach out to this special heart mom, Jenny, since she had been there and done that :)  She responded to me so quickly and was able to just understand what we are going through right now.  It helped.  It is just so nice to know that your family is not alone in this. 

Jenny also told me about a great organization called Sisters By Heart.  It is a group of Heart Moms who send out care packages to newly diagnosed HLHS families.  Just the idea of getting a list of things a group of HLHS Heart Moms recommended excited me, let alone an actual package of recommended things!  I couldn’t believe that there was such a great group out there.  You can check out their blog at: www.sisters-by-heart.org/, which has a ton of information on it that has already been very helpful to us!

Thank you!

We want to extend a huge thank you to all of our family and friends who have been so supportive through these initial days.  The phone calls, cards, prayers, prayer requests, and emails mean more than you can know.  We are thankful for all of the kindness that everyone has shown us over these past few weeks.  We will likely have to call on many of you over these next months and so thank you for being there for us in advance!

The Email

Here is a sample of the email we sent out in various forms to many family and friends:

Dear Family,

We hope this email finds you well.  We are happy to tell you that MJ is going to be a big sister around March 25, as many of you already know :)  We are expecting another daughter.  This last week we found out that our baby has an underdeveloped left side of the heart (called hypoplastic left heart syndrome).  It is a pretty rare and serious heart problem.  Although we are still getting our arms around this, we know that she we will have to surgery within her first week of life, again at 4-6 months and then again at 2 years old.  Even though nothing is certain and we have a tough road ahead of us, her prognosis is good to have a wonderful, long life with the help of the top notch team at U of M.  We hope that you can keep our unborn daughter in your prayers. We are really trying to keep a positive attitude during all of this.  Please do not feel sorry for us because there is really no reason to be sorry.  We are excited for the arrival of our second daughter and will do everything we can to meet the challenges that are ahead of us!  Your positive support means a lot to us!

 

With love,

L & A

We apologize that we had to send this out but it was the most effective way to get our news out there.  It is hard to have to have to explain this just a few times and we did want to share our news.

As we state in the email, we are not looking for sympathy.  We know that God has chosen us to be the parents of this little girl so that we can provide everything that we can.  We have the means and the support necessary to do everything we can to give our daughter the best life possible. 

Research

Over the past few days, we did TONS of research.  Some of the research was good and a lot of it was bad.  My bff, who is an awesome doc, did her own research for us and reached out to some of her doc friends.  She provided us with a wealth of information and support (as she continues to do). 

Through all of our collective research, we found that U of M’s Congenital Heart Center is ranked third in the country in pediatric cardiology surgery and Dr. Edward Bove is the surgeon to work with when your child has HLHS.  With knowledge is power and we began to feel hopeful and less confused.

We found that our daughter would need surgery on her heart within the first week of her life, then again when she is 4-6 months old and then again when she is between 18 months to two years old.  The survival rate of these surgeries varies based on the hospital and the surgeon, so this is why we decided to go with the leaders and best.  We still have a ton more to learn but we are ready and willing to move forward with a positive attitude!

November 15

This is the day we had our level two ultrasound and found out that our daughter had “an under-developed left side of the heart”. Our lives changed instantly. 

As many hypoplastic left heart syndrome (HLHS) stories go, we had our anatomy scan and everything looked normal but our tech couldn’t get a “good” view of the heart.  We found out we are having a girl and everything looked normal even though she couldn’t see the heart very well.  The tech joked that our daughter was a stubborn one and made me get up and walk around.  This didn’t change anything.  The tech told us that she wasn’t worried but she wanted us to come back so she could have a better look.  We made our appointment for two weeks later and headed off to Germany without a second thought.

The Monday morning after we got back from Germany we headed back to our OB office to have a follow-up scan.  Our regular ultrasound tech was out since she just had shoulder surgery so we had a new lady.  She also couldn’t get a good view of our little girl’s heart.  She also made me get up and walk around.  When I got back my OB was in the room.  This was a first and of course, made us worry instantly.  Our OB agreed with the tech that there wasn’t a “good” view of the heart and ordered a level two ultrasound at our nearby hospital.  She also asked for an echocardiogram, which she told us was to get a good view of the heart.

It took forever to get the appointment scheduled but after the tech talked to the hospital, we got our appointment scheduled for November 15 (the next day) in the afternoon.  I was nervous but not overly concerned.

I talked to one of my sisters to calm some of my fears, as I often had during my first pregnancy, and was convinced that this was just a precaution.  The tech was new and couldn’t get a good view so she called my OB in to prove she couldn’t get a good view.  My OB merely agreed.  Well, there was a reason that they couldn’t get a “good” view of our little girl’s heart.  It is underdeveloped on the left side.

My husband and I both drove to the hospital directly from work.  We were both nervous but had no idea how much our world was about to change.

The tech started on our level two ultrasound and measured everything. She kept noting how everything was measuring normal.  When she moved to the heart, she also had me get up and walk around because our little girl was not in a good position.  I was all too familiar with this.  Once she had a good view, she was no longer telling us how everything looked normal.  She was taking her measurements and was very quiet.  My husband asked how everything look and she said that one side was measuring smaller than the other, which is not normal.  I shot my husband a concerned look and the tech told us that a doctor would review all of the shots she took and then come in to talk to us.  My husband asked a few more questions and I just wanted the doctor to come in to explain this all to us.  I was scared and confused.

The doctor came in and did some measurements of his own.  He had me sit up and then began to explain how a normal heart functions.  We had anatomy, cut to the chase already!  He then moved on to how a baby’s heart in the womb functions differently.  FINALLY, he explained that our little girl’s heart was underdeveloped on the left side.  He threw out some terms and I was probably in too much shock to take any of them in.  I was crying and couldn’t believe what I was hearing.  What did this mean for our little girl?  Was she going to be okay?  Our world was spinning.

After answering a few questions that my husband could piece together, they brought us to what we figured was the bad news room.  We tried to gather ourselves a bit and put together some questions.  When the doctor came in, he answered all of the questions that he could for us.  He let us know that our baby would have to undergo a series of surgeries and that they couldn’t do the surgeries at this hospital.  So we would have to deliver at one of the area hospitals that could do the surgeries for us.  Then he told us we would have some sort of meeting with a bunch of doctors, a genetics counselor and a social worker.  He said it probably wouldn’t happen until the end of the week.  We would be able to get more information at this.

When we got home, we shared the news with our nanny.  Her son had had open heart surgery as an infant, so she assured us that there was a lot that we could do for our little girl and she would be here for us.  What are the odds that she would be in our life at this moment having been through all that she has?  We have loved having her in our lives since the moment we met her and now even more so!  Her encouragement and unwaivering support means so much to us and we are so blessed to have her in our lives.  At that moment, it was really all we wanted to hear – our little girl was going to be okay.  It isn’t a promise that anyone can make but we decided that we are going to stay positive and we are going to do everything we can to make her okay.

That night was really hard for us.  We were playing with our older daughter after dinner and I just bursted out crying.  Our older daughter came over to me and looked really concerned.  I knew I was scaring her.  I don’t think she has ever seen me cry other than perhaps a few tears of joy.  I am sure it was frightening.  I never like to see my mom cry.  So I had to pull myself together. 

We did research online and talked to our family and my bff who all provided a ton of support.  It was at that point we found that an “under-developed left side of the heart” is HLHS and the University of Michigan has a ton of up to date information about it on its website here.

When we went to bed last night, we were exhausted and still shocked and confused.