Amanda’s Story

At 19 weeks our second child was diagnosed with Potter’s Syndrome. We have set up this website to chronicle our family’s journey.

November 29, 2003

I have had suspicions that I might be pregnant for about 2 days. Took the test this morning and it was Big Fat Positive!!! Baby will be due first of August!

December 21, 2003

7 weeks

First Doctors Appointment today. Did an early Ultrasound saw the heartbeat and a little person in there. Not that it looked much like anything at this point. I was given the Due date of August 8th!

January 20, 2004

11 weeks

Monthly Dr. Visit today. Couldn’t find the heartbeat with the Doppler so Did a quick Ultrasound and baby was in there squirming and heart beating away. Thank goodness the Morning sickness is gone!

February 19, 2004

15 weeks

Monthly Dr. Visit today. Couldn’t find the heartbeat with the Doppler again. So did another quick Ultrasound and baby was in there squirming and heart beating away.

March 16, 2004

19 weeks

Monthly Dr. Visit and Ultrasound. We were hoping to find out if the baby was a boy or girl. Immediately the ultrasound tech said something was wrong. The baby has NO amniotic Fluid. She had a very difficult time scanning the baby because of lack of fluid. We talked to the Doctor; he said that when this happens there are usually problems with the babies Kidneys. We were referred to a Perinatalogist.

March 19, 2004
19.5 weeks

Appointment with the Perinatalogist. I had done some research on the Internet and knew what the worst-case scenario was and what the best was. I was expecting somewhere in the middle. The news we got was not good. The Perinatalogist confirmed that there was no fluid, and that the baby had only one kidney and that the one kidney was multi-cystic (meaning, it was seriously broken and not functioning).

An appointment was set up for us to speak with a Neaonatalogist/Geneticist.

March 19, 2004
Biology Lesson

The kidneys are responsible for filtering excess water, salt, and bad stuff from your blood. They make urine. You can live with only one kidney… but you have to have at least one. A pre-born baby doesn’t technically need kidneys to live because they are attached to the placenta in the womb. However, the pre-born baby’s responsibility is to maintain the amniotic fluid surrounding it. Amniotic fluid is mostly water, but is essentially urine produced by the baby. The baby swallows, breaths, produces, urinates, and generally maintains the fluid surrounding it.

The fluid is important for a bunch of reasons. The first is that it lets the baby float in something and protects it from being bounced around and possibly hurt by whatever the mother does. Second is that it provides a level of heat/cold protection. Third, and pretty important, is that it gives the baby moving room to stretch out its arms and legs… thus promoting proper limb development and function. And finally, and most importantly, the fact that it “breaths” the fluid causes lungs to develop they way they are supposed to. The lungs learn that they need to be stretchable and have internal volume (have air inside!)

So, what happens when the fluid isn’t there? First of all, the lack of stretching room means the baby’s limbs get squished and develop poorly or misshapen (club foot, among other problems). The joints lock up because they don’t get the right amount of flexing practice. Second, the lack of fluid inhibits lung development. You don’t need lungs when you’re in the womb, but once it’s time to breathe air, you must have lungs. Finally, lack of kidneys means that your blood can’t get rid of toxins and excess water and such.

Non-functional lungs will kill you. Non-functional kidneys will kill you (unless you get a transplant). Misshapen legs and arms never killed anybody, so that’s the least of the problems.

Lastly… the lack of moving room can more easily cause the umbilical cord to get smashed, twisted, compressed… that causes blood flow to the baby to be cut off, and generally causes the baby to die in-utero.

This combination of causes and symptoms is referred to as Potter’s Syndrome (named after the Dr. that identified it). The “classic” case is a baby that is born small, with compact limbs and a squished looking face, and has severely underdeveloped lungs and has broken or no kidneys. (I’ve seen some pictures of Potter’s Syndrome babies… other than looking a little blue, they have the same squished-face look of any other normal newborn). Potter’s syndrome is almost 100% fatal… babies normally live for 10 – 60 minutes after being born, depending on how developed their lungs are. Potter’s Syndrome occurs in between 1 – 3000 and 1 – 6000 pregnancies, depending on what statistics you read.

March 20, 2004
19.5 weeks

We’ve been given the option to terminate or to carry the baby to the end. We’ve chosen the latter. Only God has the right to end a life before its time. Plus, miracles do happen, and you never know what God’s plan is for you until it happens.

March 25, 2004
20 Weeks

Appointment with Dr. K, who explained to us what might happen when the baby is born. They would first see if the baby is capable of being put on a ventilator… they only work if the baby’s lungs have *some* function. It is also possible to put a newborn on dialysis, and technically possible to do a kidney transplant once the baby is 20 lbs. or more (that’s a looong time to wait… since a baby is 20 lbs at about 1 year of age. Dr. K is also a geneticist. So we asked if this is something that could be part of our family history that we need to worry about for future children. He said that if one parent carries the “broken kidney” gene, then you have a 50% chance of passing that gene on to your children. However, even if the gene is passed on, there is only a 15% chance that it would manifest as something… like a single kidney, or two kidneys with one not working quite as well, etc.

So, I was checked out… and I have two kidneys working just fine. Alex and Tony are going to be ultrasounded, too, to see if we have any issues. My mom, by the way, has only one kidney, so we think that that is where the genetic link comes from.

Alex’s appointment to check on his kidneys is on April 7th. We are assuming he is perfectly fine. So this is just a precaution.

March 26, 2004
20 Weeks

Follow up ultrasound with Perinatalogist. Nothing with the baby’s condition has changed and we informed him of our decision to carry to term. I will be seeing the Perinatalogist once a month for now for ultrasounds and I will continue to see Dr. B once a month also.Pray for us! We have some trying times ahead. Luckily we have God’s strength to rely on, and not our own. We wouldn’t wish this on anyone else, but if someone has to endure this (and be the 1 in 6000), then we must be willing to carry this burden so that 5999 other families do not have to.

April 2, 2004
21 Weeks

Appointment with Dr. B today. Baby’s heartbeat sounds fine. We discussed weather we would still plan to do a repeat C-section. Among other things. But there are no definite answers at this point.

April 23, 2004
24 weeks

We had an appointment with the Perinatolgoist today for another ultrasound. There is no change in the baby’s condition. Still no fluid and no kidney function. The baby is growing close to normal so far measuring 23 weeks and 3 days. I go back to see them in 4 weeks. The Ultrasound tech did try to see if she could tell what the baby was but she just couldn’t get a good look. So still unknown if it’s a boy or girl.

April 30, 2004
25 weeks

My regular OB appointment with Dr. B was today. Did the normal things, listened to the heartbeat and measured my belly. Baby’s heartbeat sounds fine. I am still measuring right on track. But at some point I should start measuring small because of lack of fluid. Also asked if I could travel, and he said I could so we will be going to Adam’s wedding in about 3 weeks.

May 17, 2004
28 weeks

We had our monthly ultrasound this afternoon. There is still no change in the baby’s condition. There is still no fluid and no kidney function. But the baby continues to grow on track measuring at 27 weeks and 6 days weighing 2 lbs 5 oz. They also checked the umbilical cord, and so far it is not being compressed… so everything else looks good. We are still praying that the kidney starts to work or that this baby has lung development without the amniotic fluid.

May 19, 2004
28 weeks

My regular OB appointment was today. Did the normal things listened to the heartbeat and measured my belly. Everything is going fine. Dr. B seemed a bit surprised that I am still measuring on track with the baby having no fluid. We are planning on setting up an appointment to talk to the Neonatologist at Piedmont Hospital to discuss what can and will be done for the baby after he or she is born. Dr. B also said that as I continue to get farther along the likelihood of having a repeat c-section increases.I also had blood taken this morning for the Sugar test for Gestational Diabetes. I sure hope this test comes out ok. He said we would know in a couple of days. I just barely passed the test with Alex so I am a little concerned but not too much.

Please continue to Pray for us, as we get closer to the birth. Decisions we have to make and plans we have to put in place are not going to be easy.

June 4, 2004
30 weeks

No Doctors appointment today. Just wanted to up date everyone. I failed the 1 hr Glucose Test for Gestational Diabetes. So I had to take the 3 hr test last week. The results came back normal. So that’s one less thing I have to worry about. My next OB appointment is on Wednesday. The next Ultrasound is on June 14th.

June 9, 2004
31 weeks

I had my regular OB Appointment this morning. Everything is going fine. Listened to the heartbeat and measured my belly. The baby is still measuring on track.Had a meeting with the Neonatologist this afternoon. We discussed what we wanted done for the baby after he or she is born. We have decided that the baby will be placed on a ventilator to assess if he or she has any lung function. Dr. J said this would take 1-2 hrs. This will allow me to get out of recovery and back into my room. At which point if the baby does not have sufficient Lung function to sustain Life. Then the baby will be removed from the Ventilator and brought to us in my hospital room where we will say our good-byes.

June 14, 2004
32 weeks

We had our monthly ultrasound this afternoon. There is no change in the baby’s condition, still no fluid and no kidney function. But amazingly the baby continues to grow well! The baby is actually measuring big at 33 weeks 6 days and weights approximately 4lbs 6 oz at this point. We still don’t know if the baby is a boy or a girl. Baby is in breech position and sitting with his/her legs crossed and arms wrapped around his/her knees (tornado drill position). With the baby in this position it is very unlikely that we will be able to find out the gender before he or she is born. But we are ready for either!!

June 23, 2004
33 weeks

Had regular OB appointment today! I am seeing some kind of Doctor once a week now. Baby’s heartbeat sounds good and my belly is still measuring on track. So nothing new just a regular Doctor visit.

June 28, 2004
34 weeks

We did yet another ultrasound this afternoon. I get these every 2 weeks for now. There is still no change in the Baby’s condition! But the baby continues to grow amazingly well. I am starting to feel like a broken record! The baby is measuring 34 weeks 6 days and estimated weight is 5 lbs and 4 oz.The doctor measured the baby’s chest and abdomen, and did a comparison ratio to see if we could tell if the lungs were developing or not. The ratio number was borderline indication of Pulmonary Hypoplasia (underdeveloped Lungs). But the doctor also said that there has been recent research indicating that the ratio number might not be completely reliable.

So he basically said this number isn’t written in stone but we should be prepared for the possibility that the baby will have severe lung problems. Which of course is nothing new! We are prepared for the worst and hoping for the best!

We are beginning to put the finishing touches on the Memorial Service. This has not been fun to plan but I am glad we decided to go ahead and plan it instead of waiting until we had to. This will be one less thing I have to worry about later, should it come to that.

Even though we still don’t know if the baby is a boy or a girl we have decided on names! Drum Roll!!! Girl — Amanda Rose, and for a Boy — Dillon Anthony!

July 07, 2004
35 weeks

I had my regular Ob appointment this morning. Did the Group B Strep test the results will come back in about a week. But I am not worried about this because having a C-section they aren’t going to treat me for it even if I do test positive. (I tested Negative with Alex).We did schedule the C-section for July 28th at 8:00 am. Exactly 3 weeks away! It’s nice to have a Date and it’s scary to have a date! I now know when this part of our Journey will end and when the Next part will begin. I just have no idea what the next part of our Journey will hold for us.

I will have at least 2 more Ultrasounds and 2 more doctors visits before the 28th. There is still a chance we could loose the baby before the C-section date, because of Cord compression. That has not been a problem so far but as the baby continues to grow it could become one. We have made it this far we are very hopeful that we will make it to the 28th.

July 12, 2004
36 weeks

For the last 3 nights and some during the day I have been having Braxton Hicks contractions. I’ve been having sleeping problems because of them. Every 10 minutes for about 30 seconds at a time. It was bad enough last night that I needed to call the Dr. to see if this was the real thing. We were a bit worried because I won’t know when my water breaks… because it won’t.This morning we went to the Dr., and I’m at 2cm and 80% effaced so these contractions have done something. The Dr. gave me a sleeping pill prescription.With Alex I was at this same state for 2 weeks! But the Dr. said if I really wanted to we could do the C-section on Friday. I had a scheduled ultrasound today at 2:30, and at that appointment the Dr. said it would be best to wait it out as long as possible.

At 36 weeks there’s a 3-4% chance that perfectly healthy babies must be put on ventilators. At 37 weeks that drops to 1%. So every week counts.

We think we are getting close but we’re going to wait it out. The baby is measuring 35 weeks and 1 day and is estimated 5 pounds 12 ounces.

July 13, 2004
36 weeks

Amanda Rose Stuchel was born today!At 1:00 AM this morning I woke up after having dreams about having contractions, and they were real! At the hospital I went from 2cm to 4cm in about thirty minutes, so they went ahead and did the C-Section because I was in real labor.

Amanda was born at 6:01 AM and was 5 pounds, 14.2 ounces. She was 16 1/2 inches long.

After having been put on ventilator to assess her lung function, Amanda’s blood carbon dioxide level was much too high. As the Drs. expected her lungs were not developed the way they were supposed to and she couldn’t live on her own.

Amanda died in my arms from respiratory failure at 8:37 AM.

Me, Tony, our pastor, and two of my best friends were there. Amanda was Baptized before she passed and we took a lot of pictures. We got foot and hand prints, and foot and hand imprints. The staff at Piedmont Hospital are wonderful and helped us with everything we needed and wanted.

My Mom was watching Alex and she and my Dad came by with him and she got to hold her. Alex got to see her too, and he was SO sweet. Tony was holding Amanda and Alex said sweetly, “Shhh.. baby sleeping. So cute.” We melted.

We said our goodbyes and left Amanda to the Hospital’s care at about 11:00 when I switched from the recovery room to the room I’m in now.

Even though we won’t be coming home with Amanda, everything worked out exactly as we had planned. We are at peace with our situation and our choices, and know that God now has Amanda and someday we will get to meet our Daughter again in Heaven. We love her very much, and are so glad we got to be with her and hug her and kiss her and tell her so. We will never forget her. She is a permanent member of our family. We love her very very much and will miss her.

Since I had a C-Section, I get to stay in the hospital until either Thursday evening or Friday morning depending on how quickly I heal.

We will be having a memorial service for Amanda on Monday July 19th at our church, Christ the King Lutheran Church at 10AM.