AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
KATHLEEN WENCK: Hi. I'm just going to tell you a little bit of my story. My daughter's story, I guess it would actually be.
When I discovered that I was pregnant with my first child, after almost eight years of marriage, I have to say I was a little more than surprised. When she arrived in May of 1987 instead of June of 1987, I was even more surprised. When I delivered her after only five hours of labor for my first pregnancy, the obstetrician was the one who looked surprised. But I'll tell you, the keys to success in anything that takes you by surprise are, number one, information, and, number two, adaptability.
Although Stephanie was six weeks early, she was at a good birth weight, at six pounds nine ounces, and she appeared to be very healthy, with none of the typical side effects or problems that you would see in a preemie. Therefore, she was labeled full term and we were discharged and sent home.
However, at her two‑week check‑up, the pediatrician was concerned that the deep dimple at the base of her spine was something that should be investigated. He made an appointment with a neurosurgeon in Cooperstown New York and suggested we keep that appointment and go and see the neurosurgeon. And it shouldn't be anything to worry about. I said I am worried. He said it's just a precaution. Precaution for what? Don't worry, I'm sure it's nothing. And out the door he went.
I have never been one to be put off easily, and I wanted more information than he was willing to give me. Thank goodness my sister is a charge nurse at Albany Medical Center and she has access to the medical library there. She became my wonderful resource, since this was the stoneage, before the Internet. She knew immediately by my description of what I was telling her and what the pediatrician had seen, she knew immediately that what he suspected was spina bifida, something of course that I had never heard of. She retrieved information on spina bifida and sent it to me snail mail before the Internet, and it was wonderful to at least have some idea of what it was the pediatrician suspected and what he was looking for.
We kept the appointment. Saw the neurosurgeon, and happily went home knowing she did not have spina bifida.
By a month old, though, we saw more problems with Stephanie. She could not have a bowel movement on her own without a suppository. We took her back to the pediatrician. Not to worry, not to worry, it's immature bowel syndrome. She'll outgrow it by three months, guaranteed. Again, we went home without even the mention of any type of therapy, no physical therapy, no massage, nothing. Take her home keep doing what you're doing three months guaranteed she'll outgrow it. Through reading I was able to learn about massage therapy, and started doing that and continued what we were doing. And he was right, by three months, guaranteed, she outgrew it.
But we were good at adapting. We took the information and we adapted and we did what we needed to do for her. Then came the asthma. Again, information from a new pediatrician who was wonderful about sharing information and our ability to adapt got us through. We learned to deal and refused to allow asthma to define her or rule her life. Yeah, happy ending. What's my point?
It would have been so much easier if we had someone local who had the information that my sister did or access to the information that my sister did, who would have been able to sit down with us, explain some of these things that we were facing with Stephanie, and maybe hook us up with physical therapy.
But still it was no big deal, and we went on. A couple years after Stephanie was born, we were ready, we got things under control, her asthma under control we were ready for a new adventure. So we decided we would like to have another child. After all, we raised Stephanie that far. We had two golden retriever puppies we raised to adult hood and our house was still intact. So we figured we could take on most anything.
In January of 1991, right on her due date, our second child, Ann Marie was born. With less than three hours of labor, I want you to know.
(Laughter)
In fact, she was so quick my husband missed the whole thing. He didn't get back from Syracuse in time.
He arrived at the hospital about an hour after Ann Marie was born. And I asked him to please go find her, that they had taken her away immediately. I actually had only got to see a glimpse of her and I knew something was terribly terribly wrong.
The pediatrician, they brought me back to my room and the pediatrician came in to meet with my husband and I. And assured us that everything was fine. Ann Marie was born with a syndrome called Pierre Roban syndrome. It was a cranial facial abnormality, nothing to worry about, she'll outgrow it. Most children do. If not, she might take a little plastic surgery to do some corrections later on. But nothing to worry about.
Where had I heard that before? I'm sure I had. Oh, and also she has a broken right clavicle. But don't worry. She also has extreme micronaphy and has a little, he was a little concerned with apnea, but don't worry.
He ordered an apnea monitor and a heart monitor and wanted to keep her in the hospital just a little bit longer to be sure that everything was all right. First it was because she was not able to nurse, due to the shape of her jaw. So I worked with the nurses and we found a preemie nipple that worked very well. She was able to adapt to that. Then we needed to get the monitor set up and we had to be trained in their use and we needed to receive instruction in infant CPR before we were allowed to take her home.
I was discharged and went home to take care of a three and a half‑year‑old who had pneumonia and be at the hospital to pump milk and feed Ann Marie and it also became my responsibility to train each new nursing shift on the use of the monitors.
Each day I would get up, have breakfast with my husband, Stephanie and my mother, who had flown up from Florida to help us out. Thank God. I would have breakfast with them at home and then take off for the hospital; pump, feed Ann Marie, and take her down to the solarium and sit in the sun with her because she also had issues with jaundice.
I would pump milk, feed her and then leave milk with the nurses so that I could go home and have lunch with my family and read to Stephanie and put her down for a nap. My husband would then leave for work. My mom would stay with Stephanie. I'd run back to the hospital and spend the afternoon repeating the morning routine.
Evening I'd run home, have dinner with my mom and Stephanie, read Stephanie a story, give her a bath, because my mother couldn't do it right. She got shampoo in her eyes every time. And then put Stephanie to bed and run back to the hospital and stay with Ann Marie until my husband came up about midnight when he got out of work and we would go home together.
We repeated this day after day for about close to a month. And we kept pushing to bring Ann Marie home. And the pediatrician kept putting us off. And after enough of it, enough was enough, and we made the decision to bring her home. And her paperwork was stamped as we walked out of the building AMA. There, we got through that. The hard part was over. Or so we thought.
We kept Ann Marie with the same pediatrician for the next couple of months, because I thought it would be better for Ann Marie to stay in his care than to switch pediatricians. He had seen her from day one he knew the history. He thought that would be easier and better for Ann Marie.
Again, with no Internet, we relied on my sister's access to the medical library at Albany Med for information on this Pierre Roban syndrome; but after researching the information she sent us, we both felt that Ann Marie did not fit the clinical picture of Pierre Roban. So we brought this to the pediatrician's attention. And especially after we visited the pediatric orthopedic surgeon regarding her broken clavicle and found out that in fact it was not broken, it had not formed all the way.
In the meantime we were also seeing this child had no muscle tone. Her nickname was raggedy Ann. She only had at this point we're two and a half months into this and she only gained a few ounces so we knew there was major ‑‑ and there was no development coming along. We knew there was much more serious concerns than Pierre Roban syndrome. When we brought it to the pediatrician's attention he pulled my husband aside and told him not to worry, everything is fine your mother is just an overreactive mother. Divide and conquer I think is the term. Only my husband came to me and said, you know, I think we need to switch pediatricians. This is not where we need to be. When he told me what happened, I said to the pediatrician we're very, very concerned we'd like a second opinion. And he turned to me and he said just when did you get your medical degree? And I said to him: About two seconds ago. We packed up Ann Marie. I was so mad. My hands were shaking so bad. We packed her up. I didn't get all of her electrodes on right and her monitor was going off. Beeping all over the place. As we walked out, the nurse is going, somebody better check those fire alarms they keep going off. There. It was just a little self‑satisfaction. We made them go through something that was maybe a little uncomfortable for them.
So on our way out of the pediatricians office I said to my husband okay now what do we do? He said we go see Stephanie's pediatrician. We immediately went down to make an appointment. They immediately took us in without an appointment, agreed with us, validated our concerns and scheduled an appointment to see the ENT specialist at Albany Med as soon as we could get in. We went to Albany Med. The ENT specialist did his scope. Said this child does not have Pierre Roban syndrome. She does have some hearing loss but she doesn't have Pierre Roban syndrome. So we left Albany Med, got halfway to Olianna, an hour and a half from Albany . First we were elated: Yes, we win, we win. We get halfway there, and we go: Wait a minute. Okay. She doesn't have Pierre Roban syndrome; what's wrong with this child?
We immediately drive to the pediatrician's office before going home and they made an appointment with the geneticist at Albany Med. Unfortunately we had to wait a month and a half for that appointment.
We did go see the geneticist, and he was concerned, very concerned, ran chromosome studies. In the meantime he referred us to Early Intervention Services. I had never heard of Early Intervention Services before. And now Ann Marie is eight months old, with hearing loss, significant hearing loss in both ears. No muscle tone to speak of. And I had never heard of Early Intervention Services so now, after a month after that appointment, we finally get the diagnosis. She has trisomy 9. Okay. Fine. She has trisomy 9. Now things are going to get better. We've got a diagnosis. Now we know what to do. Wrong. We didn't know what to do. Unfortunately, there is no prognosis for trisomy 9 that we knew of other than what the geneticist told us. His advice was if she lives she will take her home and continue doing what you're doing. And if she lives, be aware that she'll be mentally retarded. And I said to him but I don't understand. She's made it to nine months old and she isn't ill, why wouldn't she live? And his answer to me was: Because she has a condition incompatible with life.
Eventually her renal system will fail or her heart will fail or she'll just die from failure to thrive. This wasn't good enough. There had to be some answers. Early intervention services which had started, like I said, right around the same time were just wonderful, wonderful tool for us. Through early intervention she started receiving physical therapy and home based teaching services. Unfortunately, we live in a very rural area of up state New York . And Ann Marie was born in 1991.
In 1991, the early intervention program in New York was still using a court‑ordered system to provide services. We had to petition the court to mandate the county to provide the services if you could find an agency that was providing the services in your area. It was very cumbersome process that only, it only hampered receiving services as opposed to assisting. Because the process was so difficult and not in any way shape or form family friendly, many children did not receive the services they needed.
Being rural was the next hurdle to overcome. In order to receive physical therapy, we had to take Ann Marie to the local ARC three times a week. There was no way I could go back to work between doctor's appointments, taking her to physical therapy and being home for the teaching services that did come in in‑home base. When speech services were finally approved for her at age two and a half, after a year and a half battle, we had to drive 35 miles one way three times a week for speech therapy. Fortunately for us and for Ann Marie, while we were going through this, New York state was revamping the early intervention process. How and when children were received to services and who held the purse strings was being reorganized.
It was through a letter I received from the ARCGO, the ARC at that time, who was the agency providing the early intervention services in our area, that I learned about the impending changes to the early intervention program. I was thrilled to see the push to have children referred before leaving the hospital to see all services provided either at home, day‑care or preschool programs. And the best part was that the process would be changed from the court ordered process to one where services would be recommended and an IFSP, Individual Family Service Plan designed and provided all the services needed in the most family‑friendly way.
We were fortunate to have access to early intervention services and under both processes. Having been through the court order process, it made us appreciate the family‑oriented process of the new system that much more.
Through the new program, I was able to have services provided in‑house for Ann Marie's last six months in early intervention. The EI team did an outstanding job in helping me understand the educational system. I had no idea that since I had a child born with special healthcare needs and special mental health care needs that her access to the educational system was going to be completely different than it would be for a typical child. And they helped me understand the process, where to get the information I needed. They helped me understand what our options were, once Ann Marie aged out of early intervention, find a local nursery school that was inclusive and help me advocate to have the three to five program provide her services at the nursery school.
What a difference this made in all of our lives. I was able to go back to work part time. Stephanie no longer spent two days a week in the waiting room at the hospital for physical therapy or three days a week in the waiting room or driving to Stanford while Ann Marie got speech therapy, and my husband, what did he get out of this? A wife who was a lot less stressed and a lot more sane. And he'll abide by that.
The point I want to make is that birth outcomes should not be the deciding factor in whether or not a child is connected to early intervention services. Both of my children are excellent examples of why. Both fit the criteria of normal, if not altogether healthy children. Yet, there was much to worry about. The adventure would have been a lot more fun had we been connected to services right from the start. EI feeds information and helps families adapt early on, before they have time to fall apart. Every family should have access to early intervention right from the start, even if it's only to learn that your child's completely healthy and developing in the typical, normal way.
Thank you so much for your time.