A Patent Ductus Arteriosus or other wise known as a PDA is a blood vessel that is present in all babies while still in the womb that does not close within the first few hours of life.  Ductus arteriosus is a blood vessel that is open while the baby is in the womb, that allows blood to bypass the lungs and allows blood to flow from the pulmonary artery to the aorta.  When the baby is born, and the umbilical cord is cut, the baby takes a few large breaths, which cause the lungs to supply the oxygen.  The lungs expand, the blood vessels relax and receive more blood flow and the ductus arteriosus usually closes on its own.  When the ductus arteriosus does not close on its own it is known as Patent (meaning open) Ductus Arteriosus or PDA.  When the PDA does not close it allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery.  This can strain both the heart and the lungs.  

On average PDA is a fairly common congenital heart defect that is diagnosed in the United States.  Although the condition can happen in full term babies, its more common in premature infants.  It is also twice as common in girls as it is in boys.

   Here are some signs that a baby may have a PDA: 

How a PDA can be diagnosed: 

Typically a Doctor or nurse can hear a heart murmur that is the result of a baby's PDA.  A heart murmur is an extra or unusual sound heard with the heartbeat.  There can be several reasons and many causes for a baby or child to have a heart murmur that does not mean they have a PDA. 

After a Doctor or nurse suspects a PDA they will then order a Echocardiography (heart echo) or an Electrocardiogram (EKG) to take a look at the baby's heart.   The Echo is an ultra sound that can detect the size of the PDA and how the heart is responding to it.  The Echo can also tell how the treatment is working.  During an EKG the will place electrodes on the baby's chest (arms or legs) to measure heart activity.  The EKG traces the activity of the heart onto paper for the doctor to see the rhythm, speed of the heart beat and whether the heart is enlarged.

Treatment for a PDA:

For a full term newborn with a PDA that is showing no signs or symptoms the Doctors will usually try and give it time to close on its own and monitor the PDA with doctor visits.    However if a PDA is still present after the newborn stage, it generally will never close on its own.

For a premature baby a PDA can go two different routes, it can either be causing one or several of the symptoms we talked about earlier which would mean the baby would need surgery to close the PDA immediately.  If the baby is showing minimal to no regression signs from the PDA then the doctors will take a wait and watch approach, where they will monitor the baby's symptoms and PDA very closely while still in the NICU.   A PDA if given time, will usually close on its own in a premature baby but there are some instances where a baby will be discharged from the NICU with a PDA and have to follow up with their pediatrician as well as a pediatric cardiologist to monitor the PDA.  In most cases if it does not close between 6 and 12 months then they will either do surgery or a procedure to close it. 

The reason why they can not let a PDA go, usually past the age of 1, without it closing is because it puts a child at large risks for contracting an infection called infective endocarditis (IE) which is an infection of the inner lining of the heart chambers and valves.

3 ways to close a PDA:

My daughter Nora was born at 25weeks 5 days and she was diagnosed at 1 week old with a PDA. We were lucky due to the fact that Nora has had minimal complications so far with her PDA.  There were a few times in the NICU when Nora had to go up on her oxygen because they thought that her PDA was causing her heart to shunt ( oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery).   Nora also had a hard time coming off her oxygen, but she was finally oxygen free 2 days before discharge!  However she still needed the oxygen for feeds so we were sent home with oxygen.  Doctors said this was most likely because of her Chronic lung disease but also because of her PDA still being open.

When Nora was first diagnosed with her PDA it was considered small and minimal and when she contracted an infection a few weeks later, her PDA went from small to large.  The Doctors have kept a close eye on it, but she was discharged from the NICU at 39weeks 3 days and her PDA had not closed.  It is now considered small-moderate in size.  Nora also has high blood pressure, which her Pediatrician wants to make sure is not being caused by her PDA so we have been referred to a Cardiologist.  Nora is now almost 6 months actual and 2.5months adjusted and we will be seeing a Pediatric Cardiologist in two weeks, 6 days after her 6month birthday.    Judging from everything I have read and heard it sounds like Nora's PDA is past the point where it will most likely close on its own.  Her Cardiologist could still give it a bit more time, but we will have to wait and see what he decides.  I am still not sure because of her being a preemie and still being so little, whether she will have the ligation surgery or she will have the catheterization procedure.  Although a PDA can be very serious, it is also very common in premature babies and usually has no long term effects if treated appropriately.

To read more about Nora's story or to follow her PDA outcome you can go to my blog at:

http://purtylittlefowler.blogspot.com/

In researching for this post I have used the following articles:

http://www.nhlbi.nih.gov/health/health-topics/topics/pda/

http://www.cincinnatichildrens.org/health/p/pda/

 

About halfway through our NICU stay both twins were diagnosed with reflux. Blake’s was solved mostly by keeping him up right after feedings, and pacing him. The closer we got to their due date the better things got for Blake. This was not the case for Addison.

 

They first tried her on medicine, Prevacid, but that didn’t work. Next they tried adjusting her feedings so that they would run slower over a period of a few hours. That didn’t work, so they tried pushing her feeding tube down further, past her sphincter muscle and in to her intestine, bypassing the stomach all together and in hopes of stopping the refluxing. She was still having Brady spells and refluxing but not as bad or as frequent. Her case was so severe that they did not even want to attempt oral feedings.

 

At this point it was decided that she would be transferred to another NICU where there was a GI doctor on staff and would have her evaluated for a G-tube and Nissin Fundoplication. The Nissin Fundoplication is surgical procedure to treat reflux. During the procedure the surgeon would wrap the top part of the stomach around the bottom of they esophagus and stitch it into place, which reinforces the closing function of the sphincter muscle, thus preventing reflux.

 

We were very hesitant to put our baby under the knife for any reason, and while we waited for her transfer I started researching the procedure and looking for other’s experiences. There were a lot of mixed reviews about the procedure which only left me more confused, nervous and undecided.

 

When Addison was finally transferred to the new hospital, we had to wait a few days to meet with the surgeon and come up with a plan. First thing he wanted to try was moving her feeding tube back to her stomach and see how she responded, it was clear she still wasn’t tolerating it, even though she was still on reflux medicine. He also wanted to run a pH Probe to just how much reflux she was having and how often, but to do that they would have to stop her medicines and risk an increase in the reflux and potential aspiration. The surgeon was very hesitant to do the pH Probe due to the overwhelming volume she was already refluxing with meds, and cautioned us and we were left to make the decision. Seeing her in pain and choking on formula over and over and needing to be suctioned several times a day… we knew our only option was the surgery.

 

On 6/13/11, Addison underwent surgery and they were able to successfully perform the Nissin Fundo and place her G-tube. To be honest things were very rough for a few weeks after surgery, and again we questioned why we did this to our little girl. The surgery itself was successful but afterwards she stayed intubated for almost two weeks and ended up with yet another staff infection, these were things we were prepared for but not expecting. The Neo who sent her to surgery reminded us of where she started (she had always been sick from a respitory stand point) and told us point blank to expect a decent intubated period post op. The reflux certainly didn’t help her already fragile airway.

 

After those first two weeks post op, things did get MUCH better. I spent my days learning how to care for her G-tube and how to feed her. All while managing her twin brother who was already home and waiting for his sister to join us. When she came home things went well, but I must admit, I had a very strong love/hate relationship with her G-tube initially (and some days still do). But as the weeks went on and she got bigger and stronger and healthy I knew we made the right call for her. We did experience retching (where she would gag a little but couldn’t bring whatever was causing it aka reflux, up), but that too got better over time and we learned some things triggered it.

 

She is now almost 18 months old and is still primarily G-tube fed, but otherwise doing well. She is no longer in pain from her reflux and developmental is not too far behind. Had we not done the surgery it’s hard to say how much longer they would have kept her in the hospital waiting for her to out grow the reflux. 

                Aiden & Ryan are 7 months old/3.5 months adjusted, and between the two of them we’ve been through 9 surgeries, and have at least 3 more on the horizon.  So far, we’ve dealt with a PDA ligation, a reservoir placement, two shunt placements and revisions, a bilateral hernia repair and two ROP laser surgeries.  It is always scary when you’re told you baby needs surgery, especially when that baby weighs less than 2, 3 or even 4 lbs. 

                The first surgery we dealt with was Ryan’s tapping reservoir.  When he was a month old, he was diagnosed with hydrocephalus which is a direct result of his IVH.  He was way too small to have a shunt placed (which is a permanent device made to shunt spinal fluid away from his brain).  In lieu of tapping his brain directly, they placed a reservoir which is an access point through which they can more safely draw fluid out of the ventricles in his brain.  While all this sounds very scary (it is brain surgery after all), we were relieved when we got the call that his surgery was scheduled.  Although there were, which of course we were aware of, the benefits outweighed those risks.  That is the case with most  all surgeries you face in the NICU.  We knew that this would bring our tiny baby relief and would give him a chance to live. 

                That first surgery paved the way for our outlook on all further surgeries.  Of course we don’t want our children to go through anesthesia and painful recovery and all that jazz, and we absolutely fear the worst and have knots in our stomachs for the duration of every procedure, but without these surgeries our children would likely not be alive.  I thank God every day for creating people who are smart and disciplined enough to become surgeons, because really, we owe our lives to them.  We owe our children’s lives to them. 

                We always say that Aiden & Ryan have gone through more surgeries in the first ½ year of their lives than we and our families have gone though in our entire lives, combined.  But that is what makes them special little miracles that we were blessed with on that September day.  They are, and forever will be, our heroes.  They have showed us that anything is possible.  And if they I have to suffer through another few surgeries to make their lives better, I am willing to do that.  Because really, surgeries are worse for parents than they are for babies.  Case is point:  here is a picture of Aiden, hours after his shunt bilateral hernia repair.  I don’t know if I’ve ever seen a happier boy.