November 17, 2009

Preemies Deserve a Voice…

Posted in Cardiomyopathy, Health, Hospital Life, Itty Bitty Baby News, Preemie Development, Research and Development at 7:11 pm by bk2nocal

Today is Prematurity Awareness Day and I am participating in the Bloggers Unite “Fight for Preemies” campaign. I figure I will share my story and encourage those of you reading to explore the March of Dimes website for more information on how you can get involved and help the cause.  It may surprise you to find out that the US “scores a “D” and fails a half million babies each year” according to the March of Dimes.

My pregnancy was nothing special.  I was pretty normal in every way except for a creeping blood pressure that seemed to get higher and higher as the pregnancy went on.  My doctor was concerned, but not overly fearful until I went in for my 32 week appointment.  My blood pressure was elevated even more than before and the baby’s heart beat was showing some irregularities.  At first, he was going to send me home and have me report to the hospital the next morning for further fetal monitoring, but just as I was getting ready to leave, he decided that I should go to the hospital immediately to “play it safe”.  So, my husband drove me over and I was hooked up to a fetal monitor.  The heart beat continued to show irregularities and after a couple of hours, my doctor came by and told me that he was going to have me airlifted to Sacramento where they had a NICU available “just in case”.  Both my husband and I were struck with fear.  This was our first, and probably only, pregnancy (I am “advanced age” at 41) and we could not imagine losing our baby – and my husband was worried for my health.

That night, I was flown via helicopter to Sacramento, where I was once again hooked up to a fetal monitor.  My sister met us there and the doctors said that I may have to remain in the hospital for up to two or three weeks while waiting to give birth.  The hope was to “keep the baby inside as long as possible”.  The next day there were doctors in and out and in and out and finally in the afternoon, they said that the heart beat and my blood pressure were not recovering, so they were going to go ahead and take the baby C-section that night.  It was February 19, almost a full two months prior to the due date.  We were visited by a nurse who gave us the low-down on what to expect from a baby only 32 weeks along – and none of it was terribly comforting.  We were past the most crucial point in the pregnancy, but there were still possibilities for difficulty breathing, problems with eyesight and/or hearing, etc.  We were prepared for the worse when I rolled into the operating room that night.

Mackenzie beat the odds – she came out breathing on her own and was able to maintain that state.  She was on oxygen for a little while, but in every other way, she did just fine.  She was only 3 lbs. 2 oz., which by preemie standards is pretty big!  🙂  She had to have an IV and receive her food through a tube.   But, she checked out as having all her internal organs developed normally and she progressed along quickly.  My husband and I stayed with my sister and spent hours and hours at the hospital, scrubbing in to the NICU, helping with diaper changes, temperature taking, bathing and feeding.  We practiced breast-feeding and bottle-nippling all under the bright lights of the NICU, with Mackenzie in an incubator for most of the three weeks she was in the hospital.  At three weeks, and weighing just under five pounds, Mackenzie was released.  We were so excited to bring her home, even though we were woefully unprepared.   We had no bassinet (thankfully, our friend bought us one as a gift and had it ready to go), we didn’t have preemie clothes (again, my sister and friends bought us enough to get us going – my first baby shower actually came while she was still in the hospital!), but we were excited to be bringing her home.  We had medications to give her, strict rules on washing up before touching her (preemies have underdeveloped immune systems) and routines for taking her temperature each day to check for infection.

We did well for three weeks – we had weekly pediatrician appointments and we didn’t leave the house much for fear of exposure to infections, but she seemed to be doing well.  Then, in the third week, she started to have some problems breathing.  At her regular check-up we pointed it out and the pediatrician told us to just keep an eye on her.  When it seemed to get worse overnight, we made an appointment for the next day.  She was tested for RSV – a viral infection that she received a shot for before leaving the NICU – and the result was negative, but the pediatrician sent us to the emergency room immediately “just in case”.  She was tested again there and the result came back positive this time.  She was admitted and put on breathing treatments and I moved in to the hospital room with her.  We spent a week there – uncomfortable, exhausted and just plain depressed – she didn’t seem to be getting any better.  Finally, on day five, they decided she may need to be intubated and she was put on a helicopter to Sacramento (same nurse flew her down that flew me down for the pregnancy) and my husband and I got on the road to drive the two hours.

We received a phone call about an hour into the trip from the admitting doctor in Sacramento and he verified he was going to have intubate her and asked “has anyone talked to you about her heart?”  My own heart dropped.  He went on to say it was five times the normal size and it was sitting on top of her left lung making her breathing very labored.  We were left to wonder what all this meant on the rest of the drive down.

We soon discovered that she had this thing called Cardiomyopathy and that she was, as the doctor in Sacramento put it, a “very sick little girl with a very sick big heart”.  They went back and examined her X-ray that was taken in the NICU and because X-rays are easily distorted in little ones if they take a big breath, it was difficult for them to tell if her heart was enlarged at birth or not.  It had obviously gotten bigger since then either way.  But, now she would have to be on a ventilator for weeks.  Long story short, she was treated with oral medication, but failed to recover and ended up having a heart transplant on July 7, 2009.

I would like to know that every baby born, especially preemies, are tested for congenital heart defects!  These little ones are struggling enough when they come into the world, they don’t need a missed heart defect to make things more difficult.  This NY Times article talks about the “pulse oximetry” or “pulse ox” as they call it in the hospital and the findings of a study that shows it can be especially effective in catching and solving a heart issue in a newborn baby.  Although this is not just a preemie issue, I feel that it is something that can help a lot of preemies who are fighting a fight they can’t win without timely intervention.

So, let’s give all babies a voice and get these tests done – request it for your baby or tell a friend to request it for their baby.  And if it shows any abnormalities – get a closer look!

Advertisements

November 13, 2009

New Assist Device Brings Joy to One, Hope to Others!

Posted in Berlin Heart, Research and Development at 9:33 pm by bk2nocal

A while back, I wrote this post about a new assist device that was being researched, the Synergy Micro-blood pump.  Today, on the CCF email listserv someone posted this news story about a teen who has been given a new sense of freedom while he awaits a transplant.  This device, the HeartMate xVE, is the first one offering patients the chance to GO HOME while awaiting a transplant!  This is truly a miracle for those who could only look forward to sitting in a hospital bed with a large, cumbersome device to drag around with them if they were to go anywhere in the hospital.  And the fact that these devices could last up to a decade is amazing!  In 2003, 450 people died (out of 2000 on the waiting list) died while awaiting a heart.  These devices can provide an extension that offers both quantity of time and quality of life.  That is an amazing gift!

 

September 10, 2009

Desperation or Choice?

Posted in Cardiomyopathy, Health, Research and Development at 8:43 pm by bk2nocal

When your child gets sick, you will do just about anything to help them get better.  Sometimes this means watching them suffer through painful treatments and difficult procedures.  But, you do it in the hopes that after its all over, they will be better and no longer have to suffer whatever condition brought them to the hospital in the first place.  Sometimes, the treatments have side effects that cause equally bad health problems.  For example, I have met two children in the last three months who have contracted cardiomyopathy due to treatments for leukemia.  The medicine did away with their cancer, but in the process, it caused their hearts to enlarge and stop working well.  One of them contracted it when she was 2 and did fine on medication until earlier this year, when, at the age of 15, she had to have a heart transplant.  One of them is only two right now and just found out about the cardiomyopathy.  She is in remission and the cardiomyopathy seems to be controlled with the medication she is on for the time being.  But, it is yet another blow to a family that already had too much pain and illness in their young lives.

So, what do you do?  If you know that the medication can cause side effects (many of the medications M is on have some possibly serious side effects, including, ironically enough, injury to the heart itself), do you choose to not give it to them.  Of course not.  First of all, in most of these cases, they would not survive without the medication in the first place.  Second of all, with the medical advances being made, we can all hope that by the time serious problems arise, they will have solutions for those problems that are less invasive and less injurious then at present.  And hope is hope…even if sometimes that hope is tinged with fear, we choose hope.

So, it did not shock me to read in a Times article that families in Britain have begun to seek unregulated and untested stem cell treatments in China.  It is easy to get caught up in the hope, and lose sight of the possible damage.  And, at times, you wonder how much treatment restrictions are based on marketing decisions versus safety (see my prior post where I discussed the profitability gap) and how much is based on actual safety.  I know that Europe is a little less arduous in its regulatory control and cost of bringing items to market (hence the Berlin Heart being available for children there but not yet cleared in the US), but I’m sure there are still some issues with cost-benefit analysis driving medical advances.  Its just hard to know what to do, who to believe and how to proceed.

I think having a doctor you trust in these situations is of the utmost importance.  I know when I was going through the worst days with M in the hospital, I always felt like her transplant team had HER best interest in mind when making decisions.  I never felt like they gave me false hope, but I also felt like they provided me with fair assessments and all possible alternatives.  Because they are asking you to make life and death decisions based on their information, it is key to have people you totally trust giving you that information.  I think it would be worth changing doctors and even hospitals if you didn’t feel that level of trust.  Too many people stick with medical professionals because they feel “stuck,” not because they trust them.  This must be a horrible place to be.

We were lucky to end up where we did.  I had only a couple of incidents when I felt like treatment could have been better for M, and they were really driven by individuals and were remedied soon after.  I am so thankful we had and have the team of doctors and nurses working with us that we do.  I can honestly say that I can’t imagine having had a better experience in this process – its a horrible experience to have, but it is made so much better when you are surrounded by people who you can see really care and are willing to be there for you and your child.  It may be difficult, but if you are someone who has a sick child, don’t just settle for a doctor or staff you are not comfortable with – look for one that you feel is working and caring for your child and your family.  Its hard enough without additional stress.

August 7, 2009

Alternative to the Berlin Heart Being Researched

Posted in Berlin Heart, Research and Development at 1:41 pm by bk2nocal

I found out sad news this week.  The little girl who was on the Berlin Heart in the CVICU when M got transferred there passed away a little over a week ago.  She had been placed on hold for a transplant because her lungs were in such bad shape prior to going on the Berlin Heart and they had hoped that she would be able to recover some lung function with the help, but her lungs were just too damaged to recover.  My heart goes out to her family.  She was such a cute little girl…

Although the Berlin Heart is a great and life-saving device, it can not work in all cases.  And in many cases, it is very invasive.  I know that with M, when she was at her worst, they definitely considered it, but said the risks were very high in smaller babies.  We were lucky in that each time M seemed to be reaching the point where it would be necessary, she was able to recover and become stable again in a relatively short amount of time.  Unfortunately, other babies and children are not so lucky.  But, there are few alternatives available.

Enter Circulite and the Synergy Micro-blood Pump for Children and Infants.  The NIH has just awarded a grant to develop this a version of their adult device for children.  The major differences between this and current choices are:

(1)  Size – the Synergy Micro-blood Pump is the size of a AA battery.  It can be implanted in a pacemaker-like pocket, so it would not require a large device to be positioned outside the body.

(2) Invasiveness – the Synergy Micro-blood Pump is minimally invasive.

(3) Term of use – the Synergy Micro-blood Pump can be used for long-term intervention.  Most of the current systems are only usable temporarily while a child/infant waits for a heart.  This pump can be placed and in adults has been used as a long-term mechanism for taking the “load” off of the heart and allowing it to “rest” and potentially even recover.

The timeframe for development of this device is pretty long.  They will first redesign the adult device to be used in Children.  They will then have to do clinical trials of the device in Children.  They will then develop the device for infants and do the same study and testing.  But, at least there are options being developed.  Because heart problems like M’s – cardiomyopathy in particular – are so rare (M is one of twelve out of 100,000 kids to have it), there is really not much financial incentive to develop devices just for their use.  But, with the help of these government grants, it becomes a bit more financially feasible.